Parents and caregivers of children with autism know only too well the difficulty of predicting the need for healthcare services and high cost of providing this care for autism treatment and related health issues. Planning for medical expenses in advance can help relieve some of the stress and allow you to focus on getting your child the care he or she needs.

A new, independent not-for-profit can help shed light on what has often been considered a “black box” of healthcare costs and help families to better prepare to manage expenses. FAIR Health, whose mission is to bring transparency to healthcare costs and health insurance information, offers a variety of free online services. Now families can look up the cost of healthcare services on the consumer website, www.fairhealthconsumer.org. The FH Consumer Cost Lookup on the site is based on a database of billions of billed medical and dental services.

The FH Consumer Cost Lookup includes medical and dental cost data for every area in the United States. Families or caregivers of children with autism can use the service to estimate what they may be charged along with estimates of what their insurers might reimburse for out-of-network services. Now it is possible to estimate how much you will have to spend before you decide whether to go outside your insurer’s network for a medical or dental service.

For example, several tests and procedures must be performed before a diagnosis of autism can be determined. One very common diagnostic procedure is a developmental behavioral screening ‒ CPT code 96110. A family in Los Angeles with a child undergoing screening for autism can use the FH Consumer Cost Lookup to find out the potential cost of this procedure by entering the zip code for the area where the procedure will be performed and the CPT code (or name of the procedure), as illustrated in the screen shot below.

In the next screen, an estimate of the total charges is shown, with a breakdown of the estimated reimbursement and out-of-pocket costs. For a developmental behavioral screening provided in Los Angeles, it is estimated that the provider will charge $124.99. If the procedure is covered by insurance at a 70 percent rate and is performed by an out-of-network provider, the estimated out-of-pocket cost to the consumer is $37.50.

If you know the terms of your insurer’s plan, you can use the FH Consumer Cost Lookup to obtain an estimate of what you may be responsible for paying for medical services from an out-of-network provider. While this estimate is based on FAIR Health’s extensive data on the fees that providers in your area bill for healthcare services, a variety of other factors, such as deductibles or copays, may influence the exact amount that you will have to pay for services received out-of-network.

The website features an easy-to-use slider tool that allows you to personalize the cost estimate by adjusting the level of reimbursement based on the provisions of your health insurance plan.

The website also offers clear, unbiased educational articles and videos about healthcare insurance. For instance, the educational series, “Reimbursement 101,” can help consumers better understand healthcare insurance and the many variables that affect reimbursement.

Autism advocates give learning plan failing grade (Canada)
The provincial Education Department’s latest plan falls short when it comes to supporting autistic students, advocates of people with the developmental disorder say. Read more.

Editorial: Autism law requires remedy to meet original intention (Herald Dispatch)
West Virginia’s new law extending health care coverage to children with autism didn’t turn out exactly as billed, and advocates for that new coverage are now seeking a fix. Read more.

Local Artists Among Developmental Disabilities Institute Art Exhibit (Three Village Patch)
To commemorate 50 years of service, the Developmental Disabilities Institute will present an art gallery with work from people with autism and other developmental disabilities – including some from the Three Village community – on Thursday. Read more.

Birthday Parties Can Be a Real Zoo (Northbrook Patch)
My son’s birthday is coming soon. Which means we have been thinking a lot about birthday parties. 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.

In late January, the New York Times broke a story about the proposed DSM-5 change that triggered an avalanche of discussion, concern and more. To get the latest, catch up on Autism Speaks DSM-5 policy statement and FAQ.

Enjoy this month’s impact highlights!

Science

Autism Speaks issues DSM-5 Policy Statement

• Top Ten January proved to be another lively month, beginning with continued media coverage of our Top Ten Autism Research Achievements of 2011 and the publication of Geri’s annual letter from the CSO. The month culminated with considerable media coverage and community concern about proposed revisions to the medical definition of autism spectrum disorder in the 5^th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Understandably, our families are concerned about the potential implications for diagnosis and access to services, and our science leadership has been providing perspective through national media as well as our own blog and a heavily attended webchat. We will be working hard to ensure that the DSM changes do not exclude access to needed services.

• Research! We awarded the first annual Philip and Faith Geier Autism Research Grant in Environmental Sciences, to epidemiologist Daniele Fallin, of Johns Hopkins Bloomberg School of Public Health, for her cutting-edge research on gene-environment interactions.

• Adults with Autism  We hosted “Adults with Autism: Sharing Ideas, Filling the Gaps,” a research summit focused on adults development, services, and treatments.  Held in North Carolina, we brought together major donors, scientists, clinicians, and staff to discuss the research Autism Speaks is funding that is investigating what factors lead to the best outcomes in autism, lifetime trajectories, and new services and treatments.  Read all about this incredible and unique event on our science blog.

• Ireland On Jan 12-13 We held an international conference “Autism Spectrum Disorders: From Clinical Practice to Educational Provisions” at the Irish Centre for Autism and Neurodevelopment Research at the National University of Ireland, Galway. More than 600 delegates from around the world attended. You can read more on the science blog.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Housing and Residential Support Tool Kit

• Community Grants Our Family Services Community Grants recipients for 2011 were announced on January 24^th. Over $1 million in awards were issued to 53 community services organizations in the United States and Canada. The focus of the Family Services Community Grants is to promote autism services that enhance the lives of those affected by autism while expanding the field of service providers. The next round of Family Services Community Grants will be announced in February.

• Video Glossary On January 5^th, we launched an updated version of the Autism Video Glossary – a section on autism treatments. Like the first phase, this was a collaborative effort between Autism Speaks, First Signs and Florida State University. The new treatment section expands the Video Glossary’s library with the inclusion of more than 100 video clips from actual therapy sessions illustrating 22 treatments that may be used to help children with autism build skills, connect with peers and family members, and reduce challenging behaviors. It offers families a window into the various treatment options, provides a description of each method, and lists the top five research studies supporting the treatment and where to find more information. Professionals will also find the treatment section useful when working with a family to determine the best course of treatment for a child with autism.

• Housing We also launched our Housing and Residential Support Tool Kit in January. The tool kit includes a written guide, a catalogue of residential options and supports, featured house of the month, housing resources and housing in the news.   Our hope is that this tool kit will provide information to individuals with autism and their families as they thinking about housing and residential support options.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Military families sound off for autism

• Military Families Sound Off Military families finally got their say before Congress about the shortcomings in their autism insurance benefits, including the loss of all autism benefits when they retire. Autism Speaks helped organize the event and rally military families to the Capitol Hill briefing which resulted in an overflow room. Rep. John Larson of Connecticut, who is sponsoring the Caring for Military Kids with Autism Act, called the plight of America’s military families raising kids with autism “immoral.”

• And They’re Off!  Autism insurance reform campaigns in the states have launched with new bills introduced in Utah and Nebraska, a bill expanding existing benefits launched in Vermont and a bill protecting coverage for Applied Behavior Analysis already voted out of the Virginia Legislature and on the desk of Governor Robert McDonnell. Autism Speaks has spearheaded autism insurance reform campaigns nationally that have resulted in 29 states representing 70 percent of the U.S. population now protected by such laws.

• ‘Show Me’ State Shows the Facts on Autism Insurance The Missouri Department of Insurance has released an analysis of its year-old autism insurance reform law showing that the impact on premiums was 0.1 percent, a fraction of the 3 percent impact used by insurance industry lobbyists in their efforts to defeat such laws. The Missouri analysis was consistent with findings Autism Speaks has gathered from five other states showing that the implementation of autism insurance coverage has minimal impact on premiums.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Colgate University’s Women’s Hockey supports autism research

• Gooooooaaaaal! In collaboration with Autism Speaks U, Colgate University’s Women’s Hockey team is hosting their 2nd annual Autism Awareness Project on February 3, 1011. This project is in support of their team manager, Kati Williams, who is a local teenager on the autism spectrum. Through their various fundraising and awareness efforts they hope to have over 1,200 fans attend the game to help shine a bright light on autism.

• T-shirt Madness Autism Speaks was introduced with a unique and innovative fundraising opportunity with the company Sevenly. Sevenly designed a custom t-shirt for Autism Speaks and used social media to spread awareness and raise funds! Learn more here and be sad that you missed your chance to get a shirt!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Guest post by neurobiologist

Many children with autism spectrum disorders (ASD) have co-occurring medical conditions that affect their quality of life and response to therapy. One of the most common of these medical conditions is gastrointestinal (GI) disorder. Our research directly examines the relationship between the two and creates a foundation for understanding the biology and behaviors unique to children affected by both disorders. It is described, in detail, in our recent report in the journal Autism Research.

Our multi-disciplinary research group included neuroscientists, a clinical psychologist, a pediatrician and a pediatric gastroenterologist. We enrolled 121 children through Vanderbilt University, in Nashville, primarily through Vanderbilt’s autism clinic, which is part of the Autism Speaks Autism Treatment Network (ATN). These children fell into one of three groups: those with ASD and GI disorder, those with ASD only and those with GI disorder only. Their parents completed a dietary journal and questionnaires about the children’s behavior and GI symptoms. In addition, a pediatric gastroenterologist evaluated the children with GI disorders.

We found very high agreement – more than 90 percent – between parent reports of GI symptoms and the gastroenterologist’s evaluations. While the specific description of the GI condition sometimes varied between parent and physician, these findings suggest that contrary to what some people think, parents do not over-report GI conditions in their children. Also contrary to some popular thought, the children’s diet and medications did not significantly contribute to their GI distress.

Overall constipation was the most common GI diagnosis. It occurred in 85 percent of children with both autism and GI disorder and was most likely to occur in children who were younger, nonverbal and/or had significant social difficulties. In fact, we found a six-fold increase in communication disturbances in the group of children who had both ASD and GI disorder, compared to children with ASD only.

This strong association between constipation and language impairment has the support of a previous study showing a unique genetic association between children with ASD and GI disorder. As such, our findings further highlight the need for healthcare providers to be vigilant in detecting and treating GI symptoms in children on the spectrum. This is particularly important in the care of nonverbal children who can’t describe their distress. Our research also provides a strong foundation for further research on the causes and treatment of autism associated with GI disorder. We need to know more about how these co-occurring conditions affect the mental and physical health of so many children and adults.

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

Parents of autistic children hope to win coverage for care (Livingston Daily)
Justin and Amie Giersdorf’s plans for a second child were all but dashed in July when their son was diagnosed with autism — a disability they learned could cost them upward of $30,000 annually to have treated. Read more.

Autistic man struggles in Iowa’s mental health system (Des Moines Register)
Nobody in Iowa has a place for Jeff Paprocki. Since early October, Paprocki has been locked behind two sets of heavy wood and steel doors at a Des Moines hospital’s psychiatric ward. He hasn’t been outside a single time. He receives little therapy for his serious autism. He sees his family only every other Sunday, when they make the two-hour drive from Waterloo. Read more.

Autistic kids pad their knowledge (Gazette Times)
Debra Redpath’s students in the Communications classroom at Liberty Elementary School have a new tool to process everything from math facts to conversation skills: 13 iPads, one for each student. Read more.

Babies born with either parent over 35 ‘at autism risk’ (Deccan Herald)
Here’s an advice for young couples — make sure you don’t delay your progeny too much, for a study says that babies born with either parent over the age of 35 are a higher risk of suffering from autism. 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.

Should I even be surprised? College has taught me many things; how to self-advocate, how to spread awareness, and maybe most importantly that if you have a passion for something you need to go for it no matter the costs. At the same time what college also unfortunately taught me was that there are still a great deal of ignorant people out there that simply think of the black and white and avoid the grey completely.

One problem that I see as a huge indicator of this is the whole concept of “out growing” your autism. When I was first diagnosed my psychiatrist told my parents that autism was a life long diagnosis while at the same time other doctors told them there was a possibility that certain individuals would out grow the symptoms that led to the diagnosis.

I think the whole belief of this puts negative annotations toward our community. Saying someone has out grown means someone can be inclined to say someone was cured of something naturally and diminishes the need for legislation reform and funding. In either case I think we need to avoid those debates as they just cause clutter overall.

I feel more and more that I fall in the ever-growing “Grey” section of people. Sure, I graduated from college and am in graduate school but I’ve had two decades of multiple therapies and learned over time to take care and progress within myself. I’m also clearly not the typical “normal” that some people look for. I have eccentric tendencies that make me unique.

My question for those reading is, “What do you think is unique about autism that makes the understanding of individuality important?”

Let me know if you have any thoughts! Thanks everyone!

I just started a new video blog called “My Autism My Voice,” and this is one of the topics I discuss. This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Facebook page here.

Sunday February 5th marks the date of football’s biggest night – the National Football League’s 46th Superbowl! The New York Giants face off against the New England Patriots in a rematch of the 2010 Superbowl! Last time the Giants came out on top! Can they do it again? Only time will tell!

Sebree Baltimore – “I don’t know who made this, but found it and thought it to be a great way to add to the celebration.”

Kacie Lynne Campbell: “Last year’s Superbowl. My daughter is draped in our Packers towel because she didn’t have a jersey. My son, who has austism, is a big Clay Matthews fan. It was an awesome day in the Campbell/Esparza household!”

Richie Maldonado: “Little G-Man…Let’s GO Giants! :)”

Jamie Milward: “This was taken in October of 2008, supporting our teams for Halloween! It wasn’t SuperBowl but we ended up wearing the same thing during the Superbowl game that season! lol”

Kelly Rodriguez Andrus: “Go Patriots! (This is our son Bradley’s war cry face!)”

Bell discussed the Caring for Military Kids with Autism Act (HR.2288) which would ensure that the military’s TRICARE insurance program covers all military personnel, regardless of their duty status. As now structured, members of the military lose autism benefits for their children when they retire, even when wounded in action and medically retired. At a Congressional briefing Tuesday on the issue, Rep. John Larson of Connecticut, the sponsor of HR.2288, called the treatment of military families raising loved ones with autism “immoral.”

Proposed Changes to Sharon Autism Program Concern Parents (Sharon Patch)
Fourteen Sharon families with autistic children say proposed changes to one program would lead to additional costs for services to students and staff. Read more.

Grand Valley State University seeks to help students with autism transition into the workforce (M Live)
For the thousands of students from throughout Michigan who have autism, transitioning from school to the workforce can be a challenge. Read more.

Painting designed in Braselton will be U.N. stamp (Barrow Journal)
The design is simple, but the intricate stories behind a piece of artwork created in Braselton include the heartbreaking and the uplifting. Read more.

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

Last night I stumbled across a blog post that struck a chord by Leigh Merryday who writes a blog called ‘Flappiness Is….’ The post was titled ‘Silencing Ourselves- A Plea for Civility in the ASD Community,’ and I was moved and could relate entirely with the lens in which she viewed the autism community.

I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.

Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.

Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.

Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.

When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’  Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”

I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.

Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.

We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.

Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?

In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!

But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.

This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.

So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.

In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

This week’s “Got Questions” answer comes from pediatric psychiatrist Joseph Horrigan, M.D., Autism Speaks assistant vice president, head of medical research.

Vitamin and mineral deficiencies are common among those with autism, and in many cases, they relate to overly restricted eating habits. This is understandable as autism spectrum disorders (ASD) are commonly associated with gastrointestinal problems and sensory issues with food textures and smells. It is also possible that the underlying biology of autism may cause deficiencies in the digestion of certain foods, which could affect vitamin intake. For example, a recent study documented that some children with autism and gastrointestinal disturbances have impaired carbohydrate digestion.

Normal growth and good health depend on the body absorbing and metabolizing the vitamins and minerals that are part of a well-rounded diet. In addition, studies have identified several examples of nutrient deficiencies affecting thinking and behavior – for example, the ability to focus or stay alert in school. Also, nutrient deficiencies such as those involving omega 3 fatty acids may worsen behavioral symptoms such as irritability and hyperactivity. As such, it’s entirely possible that taking supplements may improve such symptoms in some individuals with ASD – especially if the individual has clinical or laboratory evidence of low levels of crucial vitamins, minerals or other nutrients.

In recent years, researchers have looked deeper into how well particular vitamins, minerals and nutritional supplements lessen the severity or intensity of core autism symptoms – namely communication difficulties, social challenges and repetitive behavior. The results of these clinical studies have been mixed.

One recent large study examined the effect of an over-the-counter supplement called Syndion on 141 children and adults with autism, as compared to the effects of a placebo pill. The researchers reported that the product effectively raised levels of vitamins and minerals in the blood. They also showed that it produced no significant side effects during the 12-week study. The study did not demonstrate meaningful improvements in autism symptoms according to three out of the four assessment tools used. It did, however, show modest but statistically significant improvements on a fourth measure (the Parental Global Impressions-Revised questionnaire) in terms of hyperactivity, tantrums and receptive language.

When interpreting the meaningfulness of these results, readers may take note that the two lead authors were also the developers of the commercial product being tested.

Despite the limitations of this study, it raises important questions as to whether vitamins may be helpful in addressing the core symptoms of autism. It is important to continue supporting research that will provide parents and individuals with clear answers about the value of vitamins, minerals and other nutritional supplements in ASD. Autism Speaks is currently funding several projects to this end, including a new study investigating the possible role of carnitine deficiency in some individuals with ASD. (Carnitine is a nutrient used by cells to process fats and produce energy. It is abundant in red meat and dairy products, but some individuals appear to have difficulties absorbing and/or metabolizing it.)

We are also funding an ongoing collaborative project, through five Autism Treatment Network sites, to collect extensive information on the dietary intake and nutritional status of children with ASD.

If you are worried that you or your child may have a nutritional deficiency, supplements may be a good option to consider. It is important that you consult with your doctor about brands and dosages. Supplements vary in quality and potency, and some may have harmfully excessive levels of certain vitamins, minerals or other ingredients.

Explore more of the studies we’re funding through our grant search, and find more news and perspective on the Autism Speaks science page.

Thanks for joining today’s “Office Hour” webchat with Drs. Dawson and Horrigan . Here is the transcript.

Please join us next month (March 1^st) and every first Thursday at 3 pm Eastern. Look for the “Live Chat” tab in the left column of our Facebook page: https://www.facebook.com/autismspeaks

Guest blog post from Autism Speaks Science Board Member 

According to a press release I received this morning, new research from Cold Spring Harbor Lab might help explain how a gene mutation found in some autistic individuals leads to difficulties in processing auditory cues and paying spatial attention to sound. [Editor’s note: See our related science news story on this Autism Speaks-funded study.]

The study found that when a gene called PTEN is deleted from auditory cortical neurons—the main workhorses of the brain’s sound-processing center—the signals that these neurons receive from local as well as long-distance sources are strengthened beyond normal levels.  That’s the first interesting part of the study.

PTEN has been associated with autism in a number of previous studies. In particular, the PTEN variation has been found in autistic people with larger heads, and it’s suspected as a cause of both additional connectivity in the brain and additional brain cell growth.

How many of today’s autism population have a PTEN variation?  Do you?  No one knows.  It’s one of many genes researchers are studying.

What I do know is that I have abnormal sensitivity to sound, as do many autistic people. Many of us are easily overwhelmed by noises that go unremarked by the rest of the population. For some time, I have realized my excess sensitivity is a two-edged sword. On the one hand, it gave me powerful insight into music and facilitated my earlier career in rock and roll. On the other hand, it has often put me at a disadvantage as I’m rendered inoperative by what others see as ordinary situations.

It’s interesting to read that PTEN may be a cause of that difference. Understanding the genetic foundation of why that happens doesn’t do me much good, but the next part of the study might:

Researchers found that those can be blocked by rapamycin, a drug currently in use as an immunosuppressant. Rapamycin as an autism therapy has been studied before and found beneficial in some cases. This study is one of the first that sheds light on “why” and speaks to a specific mechanism by which we may be disabled.

Now that I’ve come to know many people on the spectrum, I realize I am one of a fortunate few who have significant sensory sensitivity without being disabled by it.  The vast majority of autistic people who write about sensitivity do so in the context of disability. If there were a way to reduce sensory overload, I’m sure a number of folks on the spectrum today would like to hear about it.

One next step might be to see if rapamycin has the same effect in humans, and what other unforeseen effects it may have. Rapamycin has already been tried as a therapy in other contexts relating to autism. A targeted study that looked at the drug’s effect specifically on sensory overload would be very interesting.

It’s possible that this research illustrates a first step on the path to remediating a specific component of disability for many people on the spectrum. Much more testing will be needed to really know if that’s true, but it looks like a promising start.

My biggest concern is that rapamycin may have unforeseen effects elsewhere in the brain, and we won’t be able to understand that until we have conducted a sizeable human trial. We can only do so much by observing and extrapolating from mice.

An interesting aside is that Dr. Zador’s research further supports the emerging idea that excessive brain plasticity is a key component of the brain differences that lead to autism. His research premise is that the PTEN variation causes excess connectivity, and connectivity is a key element of plasticity. I’ve written about that idea in earlier posts.

I read a lot of talk in the autism community that questions why we spend money on genetic research when today’s autistic population needs help now. There is a popular perception that genetic research can only benefit unborn generations, or even worse, be used as a tool for selective abortion.

Dr. Zador’s study shows a clear pathway from a basic genetic study to a possible therapy for autistic people today, if they suffer sensory overload issues. It’s a perfect example of why this kind of work continues to be important and needs to be funded alongside all our other efforts in the autism research arena.

One of the pathways regulated by the PTEN protein involves shutting down an intracellular enzyme called mTORC1, which promotes cell growth, among other things…. While Zador is excited about “this finding that suggests that mTORC1 could be a good therapeutic target for some cases of PTEN-mediated brain disorders,” he is also keen to further pursue his team’s new evidence that cortical hyperconnectivity could be the “final pathway” by which diverse ASD genetic pathways lead to a single ASD phenotype. “Using cortical connectivity as a paradigm for assessing ASD candidate genes could provide insights into the mechanisms of the disorders and perhaps even give us clues to formulate new therapeutic strategies,” he states.

Dr. Zador’s leap from a subtle variation in genetic code to a specific behavioral aberration represents a brilliant leap of intuition and reason, backed up with careful lab work. It’s the kind of result I hope to see when I cast my vote for further genetic studies. This work was originally funded by Autism Speaks and NIH four years ago.

Here’s another really fascinating point to ponder. The PTEN genetic variation has been already associated with certain people with severe autistic disability and people with tubular sclerosis. Now, by associating PTEN with auditory sensitivity, we confront the question:  Do people like me have the PTEN difference too?  No one knows, because that study has never been done.

I’ll just say one more thing in closing. The discovery that PTEN aberrations can lead to sensory overload, and the pathway by which that happens stands separate from any question about rapamycin as a therapy. Don’t let worries about a particular drug blind you to the significance of the first finding.

Other researchers are looking at alternate ways to affect cortical plasticity in general and even connectivity as described in this study.  Rapamycin may end up being a therapeutic answer for some, but it’s equally possible that a better therapy will be developed now that we are beginning to unravel the underlying issues. One day, autistic people who are disabled by auditory overload may be able to “mute” the disability, while retaining enough sensitivity to be exceptional.

That, folks, is what the science is all about.

Family: Boy, 15, shot to death after attacking police had autism disorder (Chicago, Ill.)
A 15-year-old boy who suffered from an autism disorder was shot and killed by police in his Calumet City home after he threatened officers and cut one of them with a knife, police and the boy’s family said. Read more.

‘I Heart Autism: The New York Miracle Book Tour’ (New York, N.Y.)
The Miracle Project, a theater arts program for children with autism, announces the “I Heart Autism: The New York Miracle Book Tour” kicks off with a fundraiser and book signing on Tuesday, February 7 at Barnes & Noble in New York City. Read more.

Sheringham teenager prepares for birthday skydive (UK)
A Sheringham teenager is set to celebrate her 16th birthday by throwing herself out of a plane for a good cause. Read more.

Cuts sought in schooling costs (UK)
County Hall is looking at ways of cutting the £10.8 million it spends educating children with special educational needs outside Leicestershire. 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 two posts below were written by Caroline and Taylor, members of Colgate University’s Women’s Hockey Team. 

As our Autism Awareness game has been fast approaching, we have grown more and more excited by the second. As a sophomore, I have witnessed the first year of our autism project, and have even higher expectations for this year. Every time I see a friend, classmate, or another athlete, I ask them if they will be attending the game. Every response is alongthe lines of, “Of course! Our whole team is coming.” It is such an amazing feeling to hear such words, because we know that the whole community is behind us with this project. Ever since my freshman year at Choate Rosemary Hall, I have been involved with autism. During the month of January and February, my Choate hockey team would skate with mentally handicapped kids every Sunday, including kids with the brain disorder, autism. I became incredibly close with a boy named David. He had a huge heart and he would always tell me stories about his teams, his family, and how we were going to win the championship hockey game. When I graduated Choate, I was sad to leave such an eye-opening project, but I was quickly uplifted when my coach, Scott Wiley, announced our autism project for 2011. Coach Wiley designed this project in honor of Kati Williams, a local teenager from Norwich, who has been an avid fan of Colgate Women’s hockey for several years and now works as the team manager. She and her family have had a huge impact on our team. Last year’s project allowed us to cross paths with Christian Mast, an 11 year old boy who has autism, but also the biggest heart I know. He and his family have grown a part of our team, and we wouldn’t be where we are today without them.   -Caroline Potolicchio, Sophomore, #2

Caroline & Taylor: Members of Colgate University's Women's Hockey Team

Before even coming to Colgate, I had already heard wonderful reports about the success of the Autism Awareness game last year. With the game fast approaching it has been fun to be apart of all of the excitement and commotion I am excited to see all of our hard work pay off this coming Friday. I am so thankful to be a part of such a great team that truly cares for a bigger cause. Just this past weekend when we were on a road trip, a St. Lawrence parent approached me, because she wanted us to know her gratitude to what we were doing for autism. She explained that the biggest problem with this disorder is that a lot of people are not educated that it even exists or that they could potential be diagnosed with it. She stated how our game and the publicity that it receives could be responsible for changing someone’s life. I can contest to this first hand, because our biggest fan is eleven-year-old Autistic boy. Just the way that Christian lights up when he comes to a game to see us, makes all of our efforts and time worth while. I am very excited to see the jerseys that Christian designed for our game, and I am thankful that I have been able to be a part of spreading autism awareness.  -Taylor Craig, Freshman, #5

For more information on Colgate University’s Autism Awareness Project or to make a donation, visit www.colgate.edu/autism.  

– 

Wills writes…

(Monica’s note: Wills watches the evening news every night for current events, and we were watching together when this (the DSM-5) was announced as a possibility. As you can see, Wills has taken it as fact, even though we’ve talked to him about this. Wills is being mainstreamed in the Fall. This was in place long before Wills saw this newscast.)

I have been on the autism spectrum now for fourteen years. Ending a fourteen-year journey through such hardship, fear and compulsiveness seemed to be unheard of. To see that goal finally come into view is truly unbelievable. Little by little, I inched my way off the spectrum, overcoming so much fear and anxiety.

Now to possibly be considered “not autistic” simply over joys me.

Nearly ten years ago, I was diagnosed with autism. That marked the start of a ten year long marathon that might be coming to a close in the near future. When I saw Brian Williams say that “Aspergers might not be considered autism,” I jumped for joy along with everyone with Aspergers, I assume.

That announcement meant the world to me, and I will remember it for the rest of my life.

There are pros and cons involved in no longer being autistic. Like special needs schools. I am now too advanced for my special needs school. I will likely go to a different school in the fall. Another is, special needs services and counseling. But I think that these are helpful to anyone.

For the hundreds of thousands of people with Aspergers, we finally did it!

Monica’s writes…

As Wills’ mother, I find his take on the possibility of changing the DSM to not include Aspergers Syndrome (Wills’ diagnosis) incredibly heartfelt, as well as heartbreaking. Through endless conversations and therapy sessions, we felt that Wills was comfortable and accepting of his diagnosis. It’s painful (and yet understandable) to  see that he has been hoping to come off the autistic spectrum. He is vocal and positive about his autism, often speaking to younger groups of children about his experiences. We saw him confident in who he was.

Wills is fourteen years old. If this had come up when he was first diagnosed (we had him in therapy when he was eighteen months old), he would not have received the services that have been instrumental in his improvement.

As a young child, Wills was considered “high functioning,” but he still had many social, academic and personal issues that were debilitating. He was unable to stay in a classroom without a shadow, use a public restroom, interact with his peers, sit through any kind of school assembly, balance on a bicycle, hold a pencil or pen properly, sit in a restaurant —and the list goes on.

My worry is that children like Wills will no longer be eligible for the services he received—the very services that gave him a chance at living his life as a relaxed person, fully integrated into society.

I was surprised to see that Wills was so relieved to hear that he might not be “autistic” anymore, and that this was a great accomplishment to him. And in so many ways, it is an incredible accomplishment. He’s worked very hard, but I know other children and other families who have also worked just as hard without the same results. Who can say why some children improve while others continue to struggle? And that’s not to say that Wills no longer has issues. There is plenty to work on.

He continues in his social skills group, speech and language therapy, and sees an educational therapist to keep himself up to grade level. But these are not life-altering problems. His improvement is a miracle to me—a miracle that I want other families and children to experience.

My son is my heart, and I want him to be proud of himself whomever he turns out to be. If he is (or is not) considered diagnostically “autistic,” it’s irrelevant in terms of the way I see him, but it is obviously not irrelevant to the way he sees himself. I’m proud of Wills for writing about his true feelings. His happiness and self-esteem are critical, of course, to his leading a happy life- which is all we want for our child. There is, as I said before, work to be done.

Have you had these conversations with your children and family? Tell us what you think by leaving a comment and by sharing this post. 

Making A Difference Using our Talents and Gifts (Bloomingdale-Riverview Patch)
Sometimes I sit down at my computer to write and the words just flow like water. My fingers fly effortlessly across the keyboard as my thoughts are given form. Read more.

Blue Shield, CDI Reach Settlement on Coverage of Autism Therapy (California Healthline)
On Tuesday, California Insurance Commissioner Dave Jones (D) announced a settlement with Blue Shield of California in which the insurer agreed to immediately cover specialized therapy for people with autism, the Los Angeles Times reports (Lifsher, Los Angeles Times, 2/1). Read more.

Why Do We Want Autistic Kids to Have Superpowers? (Discover Magazine)
Last week saw the debut of Touch, Kiefer Sutherland’s show about a father whose non-neurotypical son turns out to be able to predict future events. This comes on the heels of Alphas, which also gave us Gary, another person who appears to be on the autism spectrum but who has the ability to see hidden energies. And the notion of autistic people as savants or special fixers has been around forever. Read more.

Autisable’s goal is to create a community of individuals with various viewpoints surrounding the controversies of autism, and to give back to the autism community through donations to organizations that help the autism community.

Our Blog will be syndicated onto this platform as we are thrilled to become a part of this community, while connecting with others in the autism community.

Friend and subscribe to our blog on Autisable: http://autismspeaks.autisable.com

Don’t have an Account on Autisable? – Please join and share your journey. Start here: http://www.autisable.com/register.aspx

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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 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.