Chicago Tribune: Autism no obstacle for boy, 13, handling duties at former teacher’s wedding

Dressed in a freshly starched tux with a pale pink tie, Will McCall tapped the microphone, looked at the audience and began reciting the John Lennon lyrics chosen by the bride and groom.

He had practiced for days, memorized a sheet of instructions, and now the moment had come.

“Grow old along with me/ The best is yet to be/ When our time has come/ We will be as one

At 13, the Glencoe boy just wants to be like everyone else. He hates the word “autism,” a condition that has often kept him in separate classrooms and schools. So he was elated when asked to be in the wedding of his former teacher and baby sitter, Melissa Newman.

While people with autism often struggle socially, Will thrives around other people and has come a long way since Newman met him at age 4, when he used to hide from family members, she said.

“He’s grown up a lot in the past year,” Newman, 33,of Wheeling said. “He can be proud and comfortable instead of being scared.”

This month,Will and his sister, Taylor, 11, walked down the aisle as a junior groomsman and junior bridesmaid at Newman’s wedding to Benjamin Burke in Lincolnshire.

Will’s parents were nervous and excited about their son’s role — and admittedly relieved that he read the lyrics without too much embellishment.

“He might decide to sing a song,” his father, Chip McCall, said later. “I am glad he stuck with the script.”

At Will’s tux fitting a few days earlier, he admired himself in the mirror. “I am very handsome,” he murmured, then asked his mother, “Can I wear this when we get home?”

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Disability Scoop: High Court Rejects Autism-Vaccine Case

The U.S. Supreme Court has declined to hear a case brought by a woman who says her son’s autism was caused by vaccines he received.

Chandra D. Price sought compensation in 2008 from the National Vaccine Injury Compensation Program, later claiming that her son Christopher T. Wynn’s autism was caused by vaccines “being given in back-to-back increments, and by mercury toxicity.”

The U.S. Department of Health and Human Services moved to dismiss the claim arguing that Price had waited too long after her son was diagnosed in 1994 to seek compensation. Under the Vaccine Act, injury claims must be brought within 36 months of the onset of symptoms.

After years of back and forth, an attorney for Price filed a motion to dismiss her petition in 2012. Nonetheless, Price pressed forward independently and sought to reopen the case explaining that her attorney “misunderstood when Christopher’s last vaccine had been administered, which caused him to erroneously conclude that the claim had been filed outside of the Vaccine Act’s statute of limitations.”

However, a special master determined that Price did not provide sufficient reason for the case to be reopened and her request for a subsequent review of the matter was deemed to have been filed too late.

Ultimately, Price brought her case before the U.S. Court of Appeals for the Federal Circuit, which ruled last year that Price did not have grounds to proceed.

“Under the Vaccine Act’s limitations period, Ms. Price was required to file her claim within thirty-six months, or by June 29, 1997,” the ruling stated. “Though… the thirty-six month limitation period is subject to equitable tolling, there is no indication that equitable tolling would apply to Ms. Price’s delay of over ten years in filing her Vaccine Act Petition.”

Price then asked the Supreme Court to consider the matter, but in an order this week, the high court declined without any comment.

The court’s action comes amid renewed attention to vaccines with the U.S. Centers for Disease Control and Prevention reporting more than 150 cases of measles across the country so far this year. Most of those who have contracted the illness were not immunized.

Medical experts have widely discredited any link between vaccines and autism. A 1998 study largely responsible for sparking fears about an association between autism and the measles, mumps and rubella vaccine was retracted in 2010.

Disability Scoop: Oscar Contender Depicts Parents Coping With Son’s Diagnosis

A short film documenting the intimate thoughts and fears of a couple after learning that their baby was born with a rare disability is up for an Oscar.

Polish film student Tomasz Śliwiński and his wife Magda Hueckel turned the camera on themselves when they learned that their son Leo had congenital central hypoventilation syndrome, also known as Ondine’s Curse. The condition keeps the boy from breathing while he sleeps and means he will likely face a lifetime of relying on a ventilator.

“We really felt our life ended at that time,” Śliwiński told TODAY. “We thought we had to be locked at home with Leo, have no friends, so filming was therapy for us.”

Called “Our Curse,” the documentary follows the couple as they adjust during their son’s first months of life, coping with an array of medical equipment needed to keep the boy alive, confronting their own fears and learning to love Leo.

The footage includes frank conversations between Śliwiński and Hueckel on the couch in their Warsaw home with Śliwiński going so far as to express his concern that his son may commit suicide when he’s able to understand his disability.

Now 4, however, Śliwiński told TODAY that Leo is doing well and learning to speak and the family is moving forward.

“The therapy is over and we have to start living. It was natural we had to stop shooting this and start enjoying life as fully as we can,” the filmmaker said.

The 27-minute film is one of five nominated in the documentary short subject category. The winner will be announced at the Academy Awards on Sunday.

NYT: For Special-Care Residents, New York State Policy Means Leaving Home

Long after lunchtime one recent afternoon, John Cosentino sat at his usual table, eating his usual snacks. On this day, he was the only resident of the Brooklyn Developmental Center in its cavernous cafeteria, drafty and lit with the bleakness of an earlier era.

His father, Tony Cosentino, arranged fruit salad, nuts and pretzels on a paper plate, which John grabbed. Mary Ann Cosentino spoon-fed her son yogurt.

“Very good, John!” she said.

She tensed when John started waving his left hand near his forehead, past the ear he long ago mutilated and the blue eye blinded in a fall at the center. This was his sign that he might hit himself. Instead, he gestured for his white mitts from his L.L. Bean canvas bag monogrammed “J C,” and put them on. Then he suddenly stood up and pushed back his chair. Visit over.

For John Cosentino, 50, an intellectually disabled adult with profound autism and self-injurious behavior who does not speak, this routine has been his refuge. He has lived at the sprawling, state-run center in East New York off the Belt Parkway since he was a teenager. Sometime this year, however, his routine will abruptly end, and he, like the other remaining residents of the institution, will probably enter a group home.

Continue reading NYT: For Special-Care Residents, New York State Policy Means Leaving Home

NYT: More Differences Than Similarities Are Found in Autistic Siblings

Most siblings with a diagnosis of autism do not share the same genetic risk factors for the disorder and are as distinct in their behaviors as any brothers and sisters, scientists reported on Monday in a study that came as a surprise to many doctors, if not to parents.

Scientists analyzed genetic material from 85 families, using a technology called whole-genome sequencing. Unlike other approaches, which illuminate a sample of a person’s genetic material, the whole-genome technique maps out the entire voluminous recipe, every biological typo, every misplaced comma or transposed letter. Each of the families had two children with a diagnosis of autism.

The researchers focused their analysis on about 100 genetic glitches linked to the development of autism. They found that about 30 percent of the 85 sibling pairs in the study shared the same mutation, and about 70 percent did not. The sibling pairs who shared a genetic glitch were more similar to each other, in their habits and social skills, than those pairs whose genetic risks were different, the study found.

The finding drives home the exasperating diversity of autism, even in the most closely related individuals. And it suggests that scientists will need to analyze tens of thousands of people, perhaps more, to tell any meaningful story about its biological basis.

Experts said the report, in the journal Nature Medicine, would most likely encourage changes in clinical practice. Some hospitals analyze the genetic profile of the eldest affected sibling to try to understand an infant, or to advise parents of the odds of having another child with the same disorder. That approach is not informative in most cases, the study authors said.

“This is very important work for people like me,” said Valerie South, an emergency nurse in Oakville, Ontario, outside Toronto. Her sons Cameron, 20, and Thomas, 14, have severe autism. In a family of four or more, the odds of having two children with autism is about one in 10,000. Continue reading NYT: More Differences Than Similarities Are Found in Autistic Siblings

LA Times: Autism genomes add to disorder’s mystery

Less than a third of siblings with autism shared the same DNA mutations in genes associated with the disorder, according to a new study that is the largest whole-genome sequencing for autism to date.

Canadian researchers sequenced whole genomes from 170 siblings with autism spectrum disorder and both their parents. They found that these sibling pairs shared the same autism-relevant gene variations only about 31% of the time, according to the study published online Monday in the journal Nature Medicine.

More than a third of the mutations believed to be relevant to autism arose in a seemingly random way, the study also found.

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NPR: Museum Opens Doors, Turns Down Lights For Autistic Kids

On a Saturday at the Pacific Science Center in Seattle, Wash., life-size robotic dinosaurs roar. A giant video monitor shows a person sneezing as a spray of mist shoots down from the ceiling. Nearby, naked mole rats scurry blindly through a maze of tunnels.

And since it’s all mud and rain outside, the place is packed with curious children and adults trying to keep up with them.

Loud noises, bright lights, crowded spaces: This is exactly the situation Mike Hiner tries to avoid with his 20-year-old son Steven, who is autistic.

He’s one of the many children and young adults in the Northwest who have some form of autism spectrum disorder, or ASD: In the Seattle School District, 10 percent of the special education population has ASD, and in nearby Bellevue, that figure is 17 percent. And because overstimulation can be painful for children with autism, many parents with autistic children avoid crowded, sensation-filled situations altogether — which can mean missing out on fun outings.

But some museums, including the Pacific Science Center, are recognizing the problem, and toning down the sights and sounds. One Saturday each month, the museum opens up early for families with ASD — like the Hiners, here before official hours begin.

“We’ve got the library, you know we have our usual routines that we do,” Mike Hiner says. “So it’s really nice coming here for a change. The butterfly exhibit kind of freaked him out, but that’s all right, we had fun.”

For two hours, the lights are dimmed, the loud noises are turned down and there is room to move around because it’s less crowded.

Mike Hiner says he wouldn’t have come here with his son during regular hours.

“We’re going to spend money to go see something and then you get there and you have to leave and it’s sometimes difficult,” he says. “So this is really nice.”

For families with kids with autism, maintaining the requisite quiet and calm can be limiting, and lead to feeling a little isolated. The Pacific Science Center’s Renee Gervais says the whole point of opening up early on these Saturdays is to offer more access.

“What we want is to be able to provide our programming, provide these experiences for children who may love them, who may be able to kind of run with them, who may become very inspired by that interaction,” she says.

Other museums and organizations across the country have similar programs, from the Smithsonian in Washington, D.C., to the Dallas Museum of Art. Even NASCAR holds events where autistic children go to the track to watch a live race from a quiet room.

Inside the butterfly house (the place Steven didn’t really like) unpredictable, electric blue and yellow flying insects land on tropical flowers for a quick snack. Eight-year-old Desmond Tsai takes it all in. Jeffrey Eckenroade, a docent, introduces Desmond to the heavy scent of gardenias and Jasmine.

“What does that flower smell like?” Eckenroade asks.

“Honey,” Desmond answers. “Honey like a honey-made toast.”

Desmond’s father, Gordon Tsai, says his son would never open up to a volunteer like this if it were loud and crowded.

“Clearly you can tell he’s interested and he has a lot of questions and it’s just an opportunity to ask them,” Gordon Tsai says. “Normally he wouldn’t even try to, but now he’s totally engaging with them, which is a side we rarely see.”

The two hours go by fast and 20-year-old Steven Hiner has had a great time. His sister Elizabeth helps him recap the highlights: the dinosaurs and the puzzles. “They’re good,” he says.

And with that, Steven hops onto his sister for a piggyback ride to go check out the planetarium.

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Disability Scoop: Students Design Calming Chairs For Those On The Spectrum

KANSAS CITY — Stuart Jackson was on a mission.

For years, the Overland Park, Kan. father had searched for a way to help his son find relief from the stress and anxiety often experienced by children with autism. Like many of those children, Joshua could be soothed through deep touch pressure — the kind of feeling one might get by being tightly hugged or squeezed.

Jackson came across a few potential solutions on the market, but they tended to be clunky, noisy or ineffective. And way too expensive.

So he took it to CAPS — the Center for Advanced Professional Studies in the Blue Valley School District.

And the engineering students rose to the challenge.

Using such items as a papasan chair, an inflatable air bag, a swimming pool noodle and a remote control air pump, they designed and built a device that not only provides deep pressure to calm the user, but is affordable and looks like a regular piece of furniture. It could work in the home or in an educational or clinical setting.

Now the students are testing and refining their two prototypes — the Sensory Chair and the Sensory Lounger (both trademarked) — and have applied for a patent. The ultimate goal: to get the chairs into all Blue Valley schools and beyond, maybe even into homes and clinics.

The children love the chairs, said Keith Manbeck, a CAPS instructor.

“The first time we tested it, one of the kids was on the verge of a meltdown,” Manbeck said. “Then he got in it, and he just calmed right down.”

The chairs, Manbeck said, “are real close to being done.”

“We’ll hopefully put one at Timber Creek Elementary full time next semester,” he said.

Manbeck, a computer-integrated manufacturing instructor, said the chairs will be on display at a sensory fair at a local elementary school in April.

“It’s kind of been a well-kept secret,” he said. “Now we’re ready for the public to see them.”

It’s been well-documented that sensory therapy such as deep touch pressure can calm children with autism, reducing tantrums, meltdowns and hyperactivity.

Temple Grandin discovered that concept by way of a cattle chute.

Often described as the world’s most well-known and accomplished adult with autism, Grandin observed as a teen that the cattle on her aunt’s ranch became calm when they were put in a chute that squeezed them firmly as they were given their vaccinations.

She persuaded her aunt to let her try out the chute and found that the device had the same calming effect on her.

Grandin went on to become a leading advocate for people with autism and is internationally known for using insights gained from her autism to cultivate dramatic improvements in the livestock industry. Her story was told in an award-winning HBO film in 2010.

Grandin designed a “squeeze machine” that works like the cattle chutes, providing deep touch stimulation evenly and laterally.

Amber Englehart, an occupational therapist at Timber Creek Elementary School in Overland Park, said talk of such a device came up at a parent-teacher conference with the Jacksons. Their 11-year-old son, Joshua, is in the LIFT program, which serves children on the severe end of the autism spectrum.

“Joshua’s dad asked if I knew anyone in the district who either had a hug machine, the kind from Temple Grandin, or if any school in the district had one,” she said. “But I didn’t. They’re very expensive.”

That’s when they decided to approach the CAPS program.

Jackson, an entrepreneur with a background in engineering, is president and CEO of AnalyzeDirect, an Overland Park-based medical imaging software company, and has been a mentor to students in the CAPS global business program for two years.

He put together a presentation for CAPS students that included a video showing the difficulties faced by parents with a child on the autism spectrum. He also showed them clips from the movie about Temple Grandin.

“Basically, the stuff that’s on the market either does not apply enough pressure or costs way too much,” he said. “The Temple Grandin squeeze machine costs several thousand dollars. It’s about 5 feet tall and 5 feet wide, weighs 300 pounds and has a big, industrial-strength compressor on it. It’s very noisy and is impractical for a home.”

So he challenged the CAPS students to come up with a device that was lightweight, quiet, aesthetically pleasing and could potentially be used at home.

Manbeck put his engineering students to work. They brainstormed with Englehart and came up with several ideas before deciding on the current prototypes, using Grandin’s research as their inspiration.

The lounger was the first. It has a plywood base, an air mattress pump and cushions made of high-density foam.

They took it to Timber Creek Elementary to test.

“There were five kids who tried it, and not one of them wanted to get out,” Jackson said. “So we regrouped at the beginning of this semester and talked about what we could do to make it an even better design.”

Andy Vietti, a Blue Valley Southwest High School senior, said students observed children in the LIFT program to get a better idea of what sensory issues needed to be addressed. That, combined with the Grandin movie, she said, “really gave me an emotional connection to the project.”

After more brainstorming, the students came up with a new model.

They put inflatable airbags on top of a papasan chair, then placed a vinyl cover over the bags and a swimming noodle around the edges for more cushion. They topped it all with a removable blue cover made of stretch fabric and put a yellow drape with an elastic band around the bottom of the chair to cover the components.

The pressure is regulated by a hand-held remote. The district’s risk manager has checked the chairs out and determined they are safe.

The green lounger weighs about 70 pounds, while the papasan chair, at 30 to 40 pounds, is less cumbersome and easier to transport. The cost of either chair is expected to be just under $1,000.

The students have taken the chairs to Timber Creek Elementary several times for testing.

“Some of them were a little uneasy at first,” said Austin Edmondson, a Blue Valley Northwest High School senior. “But as it inflated around them, they enjoyed the pressure and embraced it. It was pretty cool. Just seeing how it helps the children has been incredible.”

Zach Naatz, a Blue Valley High School senior, acknowledged that the sensory chair project hadn’t been his first choice when he came to CAPS this semester.

“I really wanted to be on the aerospace project,” he said. “But then I read about this one and changed my mind.”

He said he wasn’t sure what to expect at the outset: “I hadn’t had a lot of experience with children with autism.”

But now, he’s convinced he made the right decision.

“I picked this project because I knew it was going to help people,” he said. “And then when I saw the impact it had, I really wanted to see it succeed.”

Now comes the next phase of the project:

“We’ve gotten to the point where we’ve proven the concept,” Jackson said. “Now we’ve got to prove that this is filling some void.”

If they’re able to demonstrate that there is indeed a market for the chairs, the students will develop a business model then take it to potential investors.

The global business students will interview parents of children with autism as well as occupational therapists in special education classrooms and therapy centers.

“This feedback will help us to understand the competitive landscape and the size of the market while generating ideas for improving the products,” Jackson said.

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Disability Scoop: Pets May Boost Social Skills In Kids With Autism

Living with dogs, cats or other pets may help children with autism acquire social skills, researchers say in a new study that finds greater engagement among those with animals in the home.

In a survey of 70 families with children on the spectrum ages 8 to 18, researchers found that those with a pet displayed more prosocial behaviors.

“Children with any kind of pet in the home reported being more likely to engage in behaviors such as introducing themselves, asking for information or responding to other people’s questions,” said Gretchen Carlisle of the University of Missouri who worked on the study published recently in the Journal of Autism and Developmental Disorders.

Carlisle said that animals may serve as a social catalyst for children with autism, prompting kids to interact more than they might otherwise.

“Kids with autism don’t always readily engage with others, but if there’s a pet in the home that the child is bonded with and a visitor starts asking about the pet, the child may be more likely to respond,” she said.

Social skills continued to increase the longer families owned a pet, the study found. Children reported the strongest attachments with smaller dogs, though parents also indicated that their kids had deep bonds with other pets including cats and rabbits.

Of the families in the study, 57 had a pet of some kind. Most had dogs or cats, but the research also included families with fish, farm animals, rabbits, reptiles, a bird and a spider.

“Dogs are good for some kids with autism but might not be the best option for every child,” Carlisle said. “Kids with autism are highly individual and unique, so some other animals may provide just as much benefit as dogs.”

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NYT: Hoping for Smiles, Mother Gives Autistic Son a Spider-Man Party

The boy stood alone in the dim hallway of the housing project community center. He stared at a row of lockers, at a vending machine, at nothing.

In the next room, children and their parents and grandparents shouted and laughed over dance music booming from somebody’s speaker. The party was up and running.

The boy’s name was Jamel Hunter, and the party, on a Saturday night in East Harlem in November, was for him. He had just turned 8. His family did not notice him leave the party room and slip outside to the hall. They were used to that.

After a while, Jamel came back.

Every available surface of what, an hour earlier, had been an empty community room had been decorated in the colors and likeness of Jamel’s favorite superhero, Spider-Man. There were Spider-Man balloons, cupcakes, a spider made of frosting on the birthday cake, even a homemade pin-the-tail-on-Spider-Man game.

Jamel’s mother, Phyllis Atwood, 46, sat and looked around. A Spider-Man mask dangled around her neck. She was already wiped out. She had put a lot of work into this night, from reserving the room to finding the theme song to the Spider-Man television show to making her famous potato salad. The night was part party and part prayer, for it was a first for Jamel, and she wanted it to be perfect.

Jamel has autism, and slight variations from his routines can be jarring, sending him into screaming fits or silent retreats to his own thoughts. The party was a huge leap. The volume of the music, the rows and rows of trays of barbecue and soft drinks and desserts, the brightly colored balloons — it was as if Ms. Atwood were making up for lost time, throwing him three or four parties at the same time. Continue reading NYT: Hoping for Smiles, Mother Gives Autistic Son a Spider-Man Party