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Category Archives: Autism In the News

Autism in the national and local news.

Open Enrollment – What You Need to Know

Health insurance has changed dramatically in the last year, with many companies, like Anthem Blue Cross Blue Shield and IU Health, leaving the individual market in Indiana. This means there are fewer choices for 2018 making it important to begin shopping early.

The Affordable Care Act (ACA)’s open enrollment period allows individuals to enroll in a plan through the Health Insurance Marketplace. Any family who has a child with autism and wants access to therapy should have a healthy insurance plan covering ABA services. So, for those that do not currently have health insurance, or have group coverage not covering ABA Therapy, now’s the time to enroll.

To obtain insurance coverage in 2018, you mus purchase a policy between November 1 and December 15, 2017. While you may purchase a policy anytime during this period, the earliest the plan will be effective is January 1, 2018. The good news is ACA plans are fully funded and are mandated to include coverage of autism services. Plus, it doesn’t affect the cost of the plan in any way. The Insurance Department at Lighthouse Autism Center has been working diligently with an insurance broker to identify plans that will most benefit families with autism.

To learn more or inquire about purchasing a policy, you can contact Lighthouse Insurance Manager, Michele Rohyans, at 574-387-4313, or micheler@lighthouseautismcenter.com.

When asked how Lighthouse can help families, Sandy Maggioli said, “We will help families find a policy that is right for them and even help them apply for grants to cover their out-of-pocket expenses. It is our goal to help families in any way we can, starting with the insurance process.”

Can Google find the cure for autism?

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.

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.

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.

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

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.

http://www.nytimes.com/2014/10/19/fashion/how-apples-siri-became-one-autistic-boys-bff.html?_r=0

 

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.

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