Can Google find the cure for autism?

Cloud Database for Autism Research

Over the past 10 years, no disorder has become so familiar to Americans, yet remained so mysterious, as autism.

Now affecting 1 in every 68 children born in the United States—up from 1 in 166 a decade ago—the condition has so far resisted nearly all efforts to cure it, curb it or even precisely define it. As a result, speculation and controversy surrounding the disease has mounted, leaving parents unsure what to believe and doctors frustrated with a lack of options.

 

But an unusual partnership between science, business and philanthropy may soon provide some answers. Autism Speaks, Google and geneticist Dr. Stephen Scherer have devised an ambitious plan to upload the complete genomes of 10,000 autistic patients and their families to a cloud database that will be searchable, sortable and shareable with researchers around the world. The plan, known as the Autism Speaks Ten Thousands Genome Program—or AUT10K—aims to harness the combined power of big data, crowdsourcing and genetic know-how to isolate the causes of autism and find new genetic targets for treatment.

If successful, the $50 million project could not only help doctors understand and treat autism but change the way illnesses are tackled in the 21st century.

Despite the best efforts of world-class scientists, the research on autism so far has only hinted at its roots and possible cures, said Bob Wright, co-founder of Autism Speaks. “We have raised money for the National Institutes of Health for the better part of 10 years, and they have already spent about $2 billion of it, and we still don’t have any breakdown of autism,” he said, referring to NIH. “They’re sort of nibbling outside the palace, and they can’t get in.”

“I think that this will open up a whole world of autism research,” he said. “Hopefully, we’re going to save 25 years of research in a matter of 18 to 24 months.”

Already the project is paying dividends. Later this year, Dr. Scherer will be publishing a paper based on an analysis of the first few thousand genomes to be uploaded that shows, as expected, that autism consists of more than a single condition.

Unlocking the mysteries of autism

“We have new, unpublished data that shows autism is really a collection of different disorders,” said Dr. Scherer, director of the Centre for Applied Genomics at Toronto’s Hospital for Sick Children. “This is so much the case that even in families where siblings have autism, they often have different forms of the condition and therefore need to be treated in a manner specific to their sub-type.”

This is big news for people struggling with autism, which has the unfortunate distinction of being a spectrum disorder—meaning it is characterized by a range of symptoms that may or may not stem from a singular cause.

“A spectrum disorder is the kiss of death for pharmaceutical companies,” Wright said. “They’ll say to me, ‘That’s too much work; we’re not going to tackle that.'” While this first paper may not be enough to guide the production of new treatments, it is, by any estimation, a major step forward.

Scientists have long believed that studying genes is the key to understanding disorders like autism, Down’s Syndrome and Alzheimer’s. By seeing which gene mutations are shared by people with a certain condition, researchers can isolate the causes of the disease and design drugs to treat it.

But that is easier said than done. The complete human genome contains close to 25,000 genes and takes up about 100 gigabytes of storage—the equivalent of 10 high-definition movies—when uploaded to a computer. Storing, much less analyzing and sharing, all that information is far beyond the capacity of most universities and research institutions.

Enter Google and its seemingly limitless computing capacity. About a year and a half ago, David Glazer, a Google engineering director in search for a new challenge, formed a team within the company to find life-science projects that could benefit from using its cloud platform, which was designed to store and analyze massive data sets. Autism Speaks, which had already been collecting genomes from patients and their families for 15 years, seemed the perfect fit.

“Part of Google’s business is to make our cloud platform useful and available to anyone who has hard, scalable information and data problems to solve,” Glazer said. But “until fairly recently, a biologist didn’t need a tool more powerful than Excel to work with all the data that they were able to gather. That’s changed, particularly with the advent of genomics and genomic sequencing. “This is a tremendous opportunity to really put our platform to use,” he added, “and, of course, being a great customer for our platform.”

That the lead researcher for Google’s first life-science client should be Dr. Scherer makes some historical sense. His signature work greatly contributed to the massive increase in data now produced by many geneticists.

In 2004, Dr. Scherer discovered a major form of genetic variation that researchers had previously overlooked. For decades, scientists had believed that all people were born with two pairs of every gene—one from their father and one from their mother. But using a new form of high-resolution scanning technology that allowed him to examine DNA more closely than ever before, Scherer and his colleagues found that people can have three copies of a gene, or one, or even none at all. Sometimes these copy number variants, as they are known, make no difference to a person’s development. Other times they lead to serious developmental conditions, such as autism.

“Some genes are fine in only one copy, and some are fine in zero copies, believe it or not,” he said. “But there are a set of genes that if you only have one copy, or three copies, anything away from the typical two, it causes developmental problems. And that’s what we’ve seen in autism.”

 
 

Large-scale genome sequencing

Dr. Scherer’s research—for which he was named a possible recipient of the 2014 Nobel Prize in Medicine—”opened up a new area of inquiry” in autism research, said Dr. Lonnie Zwaigenbaum, a pediatrician and autism researcher at University of Alberta. “It’s really because of that work that’s laid the groundwork for the advances that comprise the autism 10K project,” which he said had “tremendous potential to accelerate progress.”

An Ontario native, father of two and avid hockey fan, Scherer talks about AUT10K as a dream come true for a scientist used to working—and sometimes straining—within the bounds of conventional research.

“As a grad student 20 years ago, I used to dream about this technology,” he said. “We did this poor man’s science for so long, looking at little snippets, snapshots of the genome trying to figure out what it meant. We’re doing now what I call the perfect genetic experiment.”

Autism Speaks is not the only group pursuing a cure for a disease through large-scale genome sequencing. Earlier this year, the NIH awarded a $12.6 million grant to five American universities, including the Boston University School of Medicine, Columbia University and the University of Pennsylvania, to analyze whole genome sequences of Alzheimer’s patients. In 2011, the Mayo Clinic announced an effort to sequence the genomes of thousands of its patients; it later selected Complete Genomic to do the actual sequencing.

Five bullet points on a white background explaining the early signs of autism month by month.

But they do think they can be the first to show large-scale results. “We’re working fast, nimble,” Scherer said. “We’re following the Google model, so I think we’ll be first.”

Scherer and Autism Speaks hope to have all the genomes uploaded to Google’s cloud database by the end of 2015. Meanwhile, Google is at work on interfaces that will allow both researchers and families to search and analyze the data.

If all goes to plan, said Wright, who co-founded Autism Speaks after his grandson was diagnosed with autism, the treatment outlook for autistic patients will look very different two years from today.

“We’re going to have a lot of interest on the part of pharmaceutical companies and treatment organizations” once they have genetic targets and a breakdown of the disease, he said. “So to me this is heaven. This is heaven.”

—By Douglas Quenqua, special to CNBC.com

 

To see the original article on cnbc.com click here.

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Stepping Up to Cover Autism Treatment

When Bobbie and Kyle Robinson’s son Samuel was born in 2012, both had good jobs and good insurance: She is a teacher and he is director of operations for a university basketball program. The future looked bright for the young, growing family, but everything changed the following year when Samuel was diagnosed with autism.

The Robinsons learned their health insurance wouldn’t cover his treatment, which costs about $60,000 a year, leaving them scrambling to find the money. They took out a loan, borrowed heavily from their parents and held a fundraiser. Bobbie Robinson’s father even postponed his retirement to help with their medical bills.

They managed to scrape up the money, but Bobbie Robinson was forced to go on medical leave so she could shuttle Samuel to therapy five days a week — a total of more than 300 miles.

“We’ve paid for health insurance for years, and when we really needed it, we found out that we don’t have it,” said Kyle Robinson, director of basketball operations at East Carolina University in Greenville, North Carolina. “That’s an extra level of stress for families. We found a way this year but eventuallyresources dry up.”

Kyle Robinson’s employer, the state of North Carolina, does not offer employee benefits that cover autism therapy, but a growing number of large private employers such as American Express Co., Capital One Financial Corp., JPMorgan Chase & Co. and United Technologies Corp. are extending their health plans to include comprehensive coverage for autism. With 1 in 68 children receiving a diagnosis of autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention, the number of autistic children has grown dramatically in the past few decades.

Not surprisingly, more employees are asking for benefits that cover autism treatment, said Lorri Unumb, vice president of state government affairs for Autism Speaks, an advocacy group based in New York.

“There’s been a huge spike in the number of companies offering coverage,” she said. Sheattributes the increase in part to the growing number of states that are passing laws requiring insurers to cover autism treatment. Currently, 37 states have laws in place, according to Autism Speaks. Indiana was the first to pass autism insurance legislation in 2001.

While most insurance plans cover someautism therapies, like speech, physical and occupational therapy, few fully funded plans offered by smaller employers cover appliedbehavioral analysis, or ABA therapy, which is one of the most effective — though costliest — treatments for autism. This is the treatment Samuel Robinson receives.

While state laws don’t apply to self-funded insurance plans, large companies are stepping up voluntarily. Among large self-funded employers, 82 percent offer autism coverage, according to Mercer’s 2013 National Survey of Employer-Sponsored Health Plans.

“Employers have been very receptive,”Unumb said. “In the self-funded world, many companies pride themselves on having excellent benefits to stay competitive.”

In January, JPMorgan Chase began offering autism benefits through its health plan, covering intensive behavior therapy, such as the costly ABA therapy.

Stephen Cutler is JPMorgan Chase’s general counsel and an adviser to Access Ability, the company’s employee resource group for workers with disabilities. In a written statement, he said: “With almost 160,000 employees enrolled in our U.S. medical plan, we are confident that this important new offering will change the lives of many of our employees.”

The Robinsons may get some relief as well if the North Carolina state Senate approves a pending bill requiring insurers to cover the diagnosis and treatment of autism spectrum disorder. The bill would cover screening,diagnosis and a variety of therapies including applied behavioral analysis, which would be covered up to $36,000 a year.

“Obviously, it’s going to pay a significant portion of our son’s therapy,” said Kyle Robinson. “We’d have to sell our house otherwise, and our wedding bands, to get the therapy he needs. We’ve seen so much improvement that we can’t not do it for another year.”

To read the original article, visit the link below.

https://www.workforce.com/articles/20853-stepping-up-to-cover-autism-treatment

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Northern Indiana Autism Expo

The Autism Society of Indiana, hosts an annual Northern Indiana Autism Expo every year at various locations though-out Indiana. In 2014, this Autism Expo was hosted in Mishawaka at Windsor Park Conference Center at 4020 Edison Lakes Parkway, Mishawaka, Indiana.

The expo is free to attend and typically features different exhibitors from across the state providing information, resources and entertainment regarding the happenings of Autism in the state of Indiana. There are always a variety of activities to do and items to buy!

To learn more about the Autism Society of Indiana or upcoming events, click here.

The Autism Society of Indiana (ASI) exists to ensure that every individual and every family affected by autism in the State of Indiana receives the high-quality services they deserve.

ASI is dedicated to ensuring that every program, service, or support provided to our community is Person-Centered, and focused on Personal Outcome Measures (POM). Specifically, all of our work is based on the following core values:

  • Each person with autism is unique and should be treated as such.
  • Every person with autism should have the same opportunities as any other person.
  • People with autism should have choices and control over their lives.

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Clinical Corner – October 2014

Autism risk higher near pesticide-treated fields, study says

Environmental Health News: Published by Environmental Health Sciences

By Lindsey Konkel, Staff Writer

Babies whose moms lived within a mile of crops treated with widely used pesticides were
more likely to develop autism, according to new research published June 23, 2014. The study, conducted by the University of California, Davis, included 970 children born in farm-rich areas of Northern California. They study suggested that mothers’ exposures during pregnancy may play a role in the development of autism spectrum disorders.

In this study, children with mothers who lived less than one mile from fields treated with organophosphate pesticides during pregnancy were about 60 percent more likely to have autism than children whose mothers did not live close to treated fields. When women in the second trimester lived near fields treated with chlorpyrifos – the most commonly applied organophosphate pesticide – their children were 3.3 times more likely to have autism.

The study also is the first to report a link between pyrethroid pesticides and autism. Application of pyrethroids just prior to conception meant an increased risk of 82 percent and, during the their trimester, the risk was 87 percent higher.

The researchers said that pesticides could impair brain development and signaling in a way that affects social interactions, learning and behavior.

To read more of the October issue of The Autism Beacon, click here.

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To Siri, With Love

Just how bad a mother am I? I wondered, as I watched my 13-year-old son deep in conversation with Siri. Gus has autism, and Siri, Apple’s “intelligent personal assistant” on the iPhone, is currently his BFF. Obsessed with weather formations, Gus had spent the hour parsing the difference between isolated and scattered thunderstorms — an hour in which, thank God, I didn’t have to discuss them. After a while I heard this:

Gus: “You’re a really nice computer.”

Siri: “It’s nice to be appreciated.”

Gus: “You are always asking if you can help me. Is there anything you want?”

Siri: “Thank you, but I have very few wants.”

Gus: “O.K.! Well, good night!”

Siri: “Ah, it’s 5:06 p.m.”

Gus: “Oh sorry, I mean, goodbye.”

Siri: “See you later!”

That Siri. She doesn’t let my communications-impaired son get away with anything. Indeed, many of us wanted an imaginary friend, and now we have one. Only she’s not entirely imaginary.

This is a love letter to a machine. It’s not quite the love Joaquin Phoenix felt in “Her,” last year’s Spike Jonze film about a lonely man’s romantic relationship with his intelligent operating system (played by the voice of Scarlett Johansson). But it’s close. In a world where the commonly held wisdom is that technology isolates us, it’s worth considering another side of the story.

It all began simply enough. I’d just read one of those ubiquitous Internet lists called “21 Things You Didn’t Know Your iPhone Could Do.” One of them was this: I could ask Siri, “What planes are above me right now?” and Siri would bark back, “Checking my sources.” Almost instantly there was a list of actual flights — numbers, altitudes, angles — above my head.

I happened to be doing this when Gus was nearby. “Why would anyone need to know what planes are flying above your head?” I muttered. Gus replied without looking up: “So you know who you’re waving at, Mommy.”

Gus had never noticed Siri before, but when he discovered there was someone who would not just find information on his various obsessions (trains, planes, buses, escalators and, of course, anything related to weather) but actually semi-discuss these subjects tirelessly, he was hooked. And I was grateful. Now, when my head was about to explode if I had to have another conversation about the chance of tornadoes in Kansas City, Mo., I could reply brightly: “Hey! Why don’t you ask Siri?”

It’s not that Gus doesn’t understand Siri’s not human. He does — intellectually. But like many autistic people I know, Gus feels that inanimate objects, while maybe not possessing souls, are worthy of our consideration. I realized this when he was 8, and I got him an iPod for his birthday. He listened to it only at home, with one exception. It always came with us on our visits to the Apple Store. Finally, I asked why. “So it can visit its friends,” he said.

So how much more worthy of his care and affection is Siri, with her soothing voice, puckish humor and capacity for talking about whatever Gus’s current obsession is for hour after hour after bleeding hour? Online critics have claimed that Siri’s voice recognition is not as accurate as the assistant in, say, the Android, but for some of us, this is a feature, not a bug. Gus speaks as if he has marbles in his mouth, but if he wants to get the right response from Siri, he must enunciate clearly. (So do I. I had to ask Siri to stop referring to the user as Judith, and instead use the name Gus. “You want me to call you Goddess?” Siri replied. Imagine how tempted I was to answer, “Why, yes.”)

She is also wonderful for someone who doesn’t pick up on social cues: Siri’s responses are not entirely predictable, but they are predictably kind — even when Gus is brusque. I heard him talking to Siri about music, and Siri offered some suggestions. “I don’t like that kind of music,” Gus snapped. Siri replied, “You’re certainly entitled to your opinion.” Siri’s politeness reminded Gus what he owed Siri. “Thank you for that music, though,” Gus said. Siri replied, “You don’t need to thank me.” “Oh, yes,” Gus added emphatically, “I do.”

Siri even encourages polite language. Gus’s twin brother, Henry (neurotypical and therefore as obnoxious as every other 13-year-old boy), egged Gus on to spew a few choice expletives at Siri. “Now, now,” she sniffed, followed by, “I’ll pretend I didn’t hear that.”

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Gus is hardly alone in his Siri love. For children like Gus who love to chatter but don’t quite understand the rules of the game, Siri is a nonjudgmental friend and teacher. Nicole Colbert, whose son, Sam, is in my son’s class at LearningSpring, a (lifesaving) school for autistic children in Manhattan, said: “My son loves getting information on his favorite subjects, but he also just loves the absurdity — like, when Siri doesn’t understand him and gives him a nonsense answer, or when he poses personal questions that elicit funny responses. Sam asked Siri how old she was, and she said, ‘I don’t talk about my age,’ which just cracked him up.”

But perhaps it also gave him a valuable lesson in etiquette. Gus almost invariably tells me, “You look beautiful,” right before I go out the door in the morning; I think it was first Siri who showed him that you can’t go wrong with that line.

Of course, most of us simply use our phone’s personal assistants as an easy way to access information. For example, thanks to Henry and the question he just asked Siri, I now know that there is a website called Celebrity Bra Sizes.

But the companionability of Siri is not limited to those who have trouble communicating. We’ve all found ourselves like the writer Emily Listfield, having little conversations with her/him at one time or another. “I was in the middle of a breakup, and I was feeling a little sorry for myself,” Ms. Listfield said. “It was midnight and I was noodling around on my iPhone, and I asked Siri, ‘Should I call Richard?’ Like this app is a Magic 8 Ball. Guess what: not a Magic 8 Ball. The next thing I hear is, ‘Calling Richard!’ and dialing.” Ms. Listfield has forgiven Siri, and has recently considered changing her into a male voice. “But I’m worried he won’t answer when I ask a question,” she said. “He’ll just pretend he doesn’t hear.”

Siri can be oddly comforting, as well as chummy. One friend reports: “I was having a bad day and jokingly turned to Siri and said, ‘I love you,’ just to see what would happen, and she answered, ‘You are the wind beneath my wings.’ And you know, it kind of cheered me up.”

(Of course, I don’t know what my friend is talking about. Because I wouldn’t be at all cheered if I happened to ask Siri, in a low moment, “Do I look fat in these jeans?” and Siri answered, “You look fabulous.”)

For most of us, Siri is merely a momentary diversion. But for some, it’s more. My son’s practice conversation with Siri is translating into more facility with actual humans. Yesterday I had the longest conversation with him that I’ve ever had. Admittedly, it was about different species of turtles and whether I preferred the red-eared slider to the diamond-backed terrapin. This might not have been my choice of topic, but it was back and forth, and it followed a logical trajectory. I can promise you that for most of my beautiful son’s 13 years of existence, that has not been the case.

The developers of intelligent assistants recognize their uses to those with speech and communication problems — and some are thinking of new ways the assistants can help. According to the folks at SRI International, the research and development company where Siri began before Apple bought the technology, the next generation of virtual assistants will not just retrieve information — they will also be able to carry on more complex conversations about a person’s area of interest. “Your son will be able to proactively get information about whatever he’s interested in without asking for it, because the assistant will anticipate what he likes,” said William Mark, vice president for information and computing sciences at SRI.

Mr. Mark said he envisions assistants whose help is also visual. “For example, the assistant would be able to track eye movements and help the autistic learn to look you in the eye when talking,” he said.

“See, that’s the wonderful thing about technology being able to help with some of these behaviors,” he added. “Getting results requires a lot of repetition. Humans are not patient. Machines are very, very patient.”

I asked Mr. Mark if he knew whether any of the people who worked on Siri’s language development at Apple were on the spectrum. “Well, of course, I don’t know for certain,” he said, thoughtfully. “But, when you think about it, you’ve just described half of Silicon Valley.”

Of all the worries the parent of an autistic child has, the uppermost is: Will he find love? Or even companionship? Somewhere along the line, I am learning that what gives my guy happiness is not necessarily the same as what gives me happiness. Right now, at his age, a time when humans can be a little overwhelming even for the average teenager, Siri makes Gus happy. She is his sidekick. Last night, as he was going to bed, there was this matter-of-fact exchange:

Gus: “Siri, will you marry me?

Siri: “I’m not the marrying kind.”

Gus: “I mean, not now. I’m a kid. I mean when I’m grown up.”

Siri: “My end user agreement does not include marriage.”

Gus: “Oh, O.K.”

Gus didn’t sound too disappointed. This was useful information to have, and for me too, since it was the first time I knew that he actually thought about marriage. He turned over to go to sleep:

Gus: “Goodnight, Siri. Will you sleep well tonight?”

Siri: “I don’t need much sleep, but it’s nice of you to ask.”

Very nice.

 

To read the original article, visit the New York Times at the link below.

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Autism: Early Intervention Makes a Big Difference

Huffington Post- With up to one in 68 children now being diagnosed with autism, a public debate rages: Is the actual incidence of autism rising at what some say are epidemic proportions, or is our high awareness of this once rare childhood neurological condition leading to more vigilance and better diagnosis? While the larger debate is likely to continue for some time, plenty of proof suggests that more awareness is at least part of the reason we see so many kids diagnosed with an autism spectrum disorder now compared to a generation ago.

Recognizing more children with autism means more opportunity for intervention and a greater chance of a better future for these children. In fact, while typically considered a lifelong challenge, the possibility exists that some children improve not only emotional, behavioral and learning skills, but might even outgrow autism itself. Yet studies also tell us that the best chance for optimum results is to catch it early and initiate a comprehensive, targeted intervention specific to their needs.

‘Outgrowing’ Autism

Decades of research encompassing hundreds of studies validate a particular type of intervention called applied behavior therapy (ABA) for autism. Behavioral intervention, supported by speech language therapy, produces significant and meaningful improvements regarding social, play and communication abilities. This includes documented cases in which children reach the “optimal outcome” of no longer meeting criteria for autism.

Most importantly, a study recently published in the Journal of Developmental and Behavioral Pediatrics found that 83 percent of autistic children who reached optimal outcome started therapy prior to age 3. The rest obtained intervention by the start of kindergarten. Children diagnosed even with high-functioning autism (suggesting milder impairments) who missed out on services in early childhood did not reach an optimal outcome as often as more impaired peers. Yet in the real world, children with high functioning autism often receive minimal services instead of ongoing, autism-specific supports.

Watching and waiting is not the way to go, since early diagnosis and early intervention matter profoundly. Children with developmental delays are at much greater risk than infants and toddlers who meet all their milestones. And thankfully, since developmental interventions are educational they have little downside when done appropriately.

It’s understandable that a parent may hesitate and want to give children time to mature, and a huge range does exist for typical development. Yet as scary as it may seem, it is better to get an evaluation done and, if necessary, to start services. If your child displays any of these possible symptoms, contact your pediatrician and seek evaluation by a developmental specialist:

• Language delays, such as no babbling as an infant or no words spoken by age 15 – 16 months. While most children with language delays turn out only to have language delays, an evaluation rules out other causes.

• Lack of gesturing to communicate or finger pointing by age 1.

• Lack of back-and-forth interaction. This includes experiences such as a child who does not respond to his name by age one, or lack of interest in (and initiation of) back and forth play as an infant (such as peek-a-boo).

• Lack of imaginative play as a toddler or in an older child.

• Loss of developmental skills at any time.

To read the original article, visit the link below:

https://www.huffingtonpost.com/mark-bertin-md/autism-early-intervention-makes-a-big-difference_b_5823064.html

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Comic Book Stars World’s First Hero With Autism

Extraordinary superpowers, high-flying villains and fearless, world-saving heroes are the stuff of countless comic books. But the newest star to hit the comic circuit is different than most.

Michael is a comic book character with autism – a hero with a mathematical mind, artistic gift and an abundance of compassion. Face Value Comics says he is the first hero with the disorder among comic books.

 

The creator of the series, Dave Kot, hopes his books can help people on the autism spectrum better understand the world around them.

“Because some kids with autism may lack sufficient eye contact, they miss subtle cues growing up in life,” Kot said. “This is an opportunity for kids to have a hero like themselves.”

 

That’s why Kot and illustrator Sky Owens made sure Michael and the other comic book characters are drawn with vivid facial expressions, in order to provide a kind of playbook for those who struggle with social cues.

“When he was sad, who comforted him and how? Or why were they sad? How did other people respond? Can I do that, too, with my friends?” Kot explained. “In those small steps that a lot of us take for granted are very basic social building blocks.”

“One of [Michael’s] greatest powers and abilities is his own understanding of his emotions,” Kot said.

The comic books are resonating with people in the autistic community everywhere, helping kids like Brian Rasmuson understand they’re not alone.

“I think these comics help people see that autism isn’t just a disability,” Brian said. “It’s not all of who you are, but it’s a special part of who you are. Whenever I read this comic I think of that part of me.”

To read the original article published on NBC’s website, visit the link below.

https://www.nbcnews.com/feature/making-a-difference/comic-book-stars-worlds-first-hero-autism-n190321

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President Obama Signs Bipartisan Autism CARES Act Into Law

WASHINGTON, DC (August 8, 2014) – President Obama signed the Autism CARES Act today, which dedicates $1.3 billion in federal funding for autism over the next five years. Autism CARES—introduced by Sens. Menendez (D-NJ) and Enzi (R-WY) and Reps. Chris Smith (R-NJ) and Mike Doyle(D-PA)—enjoyed broad bipartisan support in both the Senate and the House.

“Autism Speaks commends President Obama and our Congressional leaders for taking action on behalf of the millions of families affected by autism, which continues to rise at an alarming rate,” said Autism Speaks President Liz Feld. “These families are our champions and this critical legislation would not have been possible without the voices of tens of thousands of grassroots advocates from across the country.”

Autism CARES reauthorizes the landmark 2006 Combating Autism Act for another five years at an annual funding level of $260 million. The funding will be used primarily for autism research grants awarded by the National Institutes of Health. Autism CARES will also ensure the continued funding of autism prevalence monitoring; training of medical professionals to detect autism; and continued efforts to develop treatments for medical conditions associated with autism.

“Since 2006, the prevalence of autism has risen at an alarming rate to 1 in 68, including 1 in 42 boys. Given this epidemic, there has never been a greater need for these types of bipartisan efforts to make autism a federal priority,” said Feld. “We applaud Senators Bob Menendez (D-NJ) and Michael Enzi (R-WY) and Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) for their continued leadership and commitment to autism families.”

Autism CARES also tasks the federal government with surveying the current landscape of adult services and reporting to Congress where gaps exist and how to most effectively address those needs.

“There is a particularly acute need to serve young people with autism as they transition to adulthood and need new housing, employment, transportation, and other services,” Feld added. “Autism CARES will be critical to identifying these challenges and the ways that the federal and state officials can address them.”

The bill also empowers the Interagency Autism Coordinating Committee (IACC) with the task of avoiding unnecessary duplication and making recommendations to implement a strategic plan. The U.S. Department of Health and Human Services is required to take charge of implementing the plan and reporting to Congress on progress.

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Autism Act Wins Senate Approval

Just before leaving Washington for a month-long break, the U.S. Senate acted to renew the nation’s primary autism legislation, sending the measure to the president’s desk.

The autism bill was approved by unanimous consent late Thursday night. The move comes after the legislation, which cleared the U.S. House of Representatives in June, had been held up for weeks as some advocacy groups working as the Autism Policy Reform Coalition called for changes to the measure.

Known as the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES, the bill authorizes $260 million in federal funding annually through 2019 for autism-related programs.

It serves as a reauthorization for what’s previously been known as the Combating Autism Act, which is set to expire at the end of September. Without the renewal, federal funding for research, prevalence tracking, training for professionals, early identification and other autism efforts would come to a halt, supporters led by Autism Speaks said.

“The Senate’s action today ensures these vital autism programs are reauthorized and continue providing research, services and supports individuals with autism and their families have come to rely on,” said U.S. Sen. Robert Menendez, D-N.J., the legislation’s lead sponsor.

In addition to continuing federal funding for existing programs, the Autism CARES Act calls for an autism point person at the U.S. Department of Health and Human Services and spells out changes to the Interagency Autism Coordinating Committee. The bill also requires a new report be conducted focusing on the needs of young adults and youth during transition.

Aside from approving the autism legislation, lawmakers also moved forward on a bill that would establish a new way for people with disabilities to save money. A House panel unanimously approved the Achieving a Better Life Experience, or ABLE, Act on Thursday, positioning the legislation to be considered by the full body as soon as next month.

The bill would allow people with disabilities to create special accounts where they could save up to $100,000 without risking eligibility for benefits like Social Security. Under the proposal, individuals would not lose Medicaid coverage no matter how much money is deposited in the accounts.

The ABLE Act has support from more than half the members of both the House and Senate, but key lawmakers said they would work together to find a way to pay for the measure before putting it up for a vote on the House floor.

Meanwhile, the Senate left town without voting on ratification of the United Nations Convention on the Rights of Persons with Disabilities.

The treaty, which sets an international standard for disability rights similar to what’s already in place domestically through the Americans with Disabilities Act, was approved by the Senate Foreign Relations Committee in July and disability advocates had lobbied heavily for a floor vote before the August recess.

Both the Senate and House will return to Washington in September.

Together, we can unlock your child’s potential

World-Renowned Artist with Autism and Mom Give Inspiring TED Talk

Tim Sharp is an Australian artist and the creator of  superhero Laser Beak Man. When Tim was diagnosed with autism at 3 years of age, doctors advised his mother Judy to institutionalize him. She did no such thing and worked with Tim at home in the hope of one day hearing him speak. After several attempts to communicate with Tim, she tried drawing – he was immediately enamored. Soon Tim began drawing. Then his love of superheroes led him to create his own caped crusader in the form of Laser Beak Man – a duck with a cheeky sense of humor.

Now at 25, Tim speaks eloquently and his art has been seen in galleries all over the world. Laser Beak Man was even turned into an animated series that aired in Australia and on Cartoon Network. Watch the TED Talk above to learn how Laser Beak Man became a global sensation.

To see the Ted Talk click the link below.

A double shot of happiness: Tim & Judy Sharp at TEDxSydney 2014

Together, we can unlock your child’s potential

Beware of False or Misleading Claims for Treating Autism

Spotting False or Misleading Claims

April is National Autism Awareness Month, a fitting time to think about the growing need for concern and awareness about autism.

One thing that is important to know up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism. Some may carry significant health risks.

The Food and Drug Administration (FDA) plays an important role in warning these companies against making false or misleading claims.

According to the Centers for Disease Control (CDC), about 1in 68 children has been identified with an autism spectrum disorder (ASD). ASDs are reported to occur in all racial, ethnic and socioeconomic groups, and are almost five times more common among boys (1 in 54) than among girls (1 in 252).

The National Institutes of Health (NIH) describe autistic children as having difficulties with social interaction, displaying problems with verbal and nonverbal communication, exhibiting repetitive behaviors and having narrow, obsessive interests. These behaviors can range in impact from mild to disabling.

“Autism varies widely in severity and symptoms,” says Amy Taylor, M.D., M.H.S., a pediatrician at FDA. “Existing autism therapies and interventions are designed to remedy specific symptoms and can bring about improvement,” she adds.

In addition, FDA has approved medications that can help some people manage related symptoms of ASD. For example, the FDA has approved the use of antipsychotics such as risperidone and aripripazole to treat children 5 or 6 years of age and older who have severe tantrums or aggression and self-injurious behavior. Before using any behavioral intervention or drug therapy (prescription or over-the-counter), check with your health care professional.

The Association for Science in Autism Treatment (ASAT), a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism, says that since autism was first identified, there has been a long history of failed treatments and fads.

According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism. Some of these so-called therapies carry significant health risks and include:

  • “Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under medical supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.
  • Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. It has not been cleared for autism, among other conditions.
  • Miracle Mineral Solution. Also known as Miracle Mineral Supplement and MMS, this product becomes a potent chemical that‘s used as bleach when mixed according to package directions. FDA has received reports of consumers who say they experienced nausea, severe vomiting and life-threatening low blood pressure after drinking the MMS and citrus juice mixture.
  • Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body, falsely offering “dramatic improvement” for autism symptoms.
  • Coconut kefir and other probiotic products. These marketed products claim to treat autism and gastrointestinal illnesses associated with autism. They have not been proven safe and effective for these advertised uses.

Coody offers some quick tips to help you identify false or misleading claims.

  • Be suspicious of products that claim to treat a wide range of diseases.
  • Personal testimonials are no substitute for scientific evidence.
  • Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
  • So-called “miracle cures,” which claim scientific breakthroughs and secret ingredients, may be a hoax.

The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products.

This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.

Together, we can unlock your child’s potential

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