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Category Archives: Autism Advocacy

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

2014 Northern Indiana Autism Expo

The Autism Society of Indiana’s annual Northern Indiana Autism Expo is Saturday, October 25th from 10:00 a.m. till 1:00 p.m. in Mishawaka, Indiana. The expo will take place at Windsor Park Conference Center at 4020 Edison Lakes Parkway, Mishawaka, Indiana.

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

To register for the free event click here.

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.

 

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