Month: April 2013

Giving Autistic Children A Voice

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EX-FOOTBALL PLAYER WORKS WITH NEUROPSYCHOLOGIST TO HELP CHANGE THE LIVES OF AUTISTIC CHILDREN

 	Former professional football player Larry Harris and neurophysiologist Michelle Dunn pooled their talents to create a radical speech therapy that’s giving the high functioning autistic children they work with better futures. Photo by Joe Tabacca

A professional football player, opera singer, and a pediatric neuropsychologist meet in a church choir and possibly change the future for autistic children.

Larry Harris and Michelle Dunn actually pooled their talents to create a radical and apparently very effective speech therapy that’s giving the high functioning autistic children they work with better futures.

“You always have to think out of the box,” said Dunn, a Ph.D.’ed pediatric neuropsychologist and neurophysiologist who is also director of Montefiore Medical Center’s Montefiore Autism Center. “If one thing is not working, you have to be flexible and think in a creative way and try new things.

“Larry is a very creative guy,” she said. “He’s been through all these careers and see things from lots of different perspectives. He was willing to see things from outside the box, too, and it seems to be working.”

The duo created a program that taught six high-functioning kids on the autism spectrum the singing and breathing techniques professional singers use to control and modulate their voices.

The system they developed “involves the systematic, kinetic procedures that singers have to deal with on a daily basis,” Harris said. “It involves the disciplines I was familiar with from football along with my familiarity with human anatomy.”

Harris followed his stint with the Houston Oilers with a second career as a celebrated baritone who has sung roles from La Traviata to Aida in venues all over the world.

He and Dunn started their collaboration two years ago after meeting while both were singing in the Immaculate Heart of Mary Catholic church choir in Scarsdale.

Dunn has worked with autistic children for more than 30 years. She created a program, Social Skills In Our Schools, with which teachers can help autistic students improve their social skills.

“Having social skills is a big predictor of outcomes for kids on the spectrum,” Dunn said. “Schools typically do not deal with that at all.”

Several high school senior clients Dunn had worked with for years were headed to college in the fall. “They can get through college, but when they come out, in order to be taken seriously in an interview you have to have a kind of okay sounding voice,” Dunn said. “If the voice is too unusual, they’re kind of dismissed out of hand before the interview even starts.”

Dunn asked Harris about any techniques he might use that could help autistic children modulate their voices and speak more slowly.

“We’re talking about voice and the use of the voice to communicate,” Dunn said. “Prosody (rhythm, stress and intonation of speech) deficits have been observed in these kids for some time, and there have been no effective interventions developed by speech language pathologists or neuropsychologists. ”

Harris has taught singing and coached other singers. He showed six of Dunn’s longtime patients, among other things, how to stand correctly, to breathe and speak from their diaphragm and the various parts of their throats and mouths — he’s even taken photographs of the students’ mouths so they can see the anatomical parts and understand how they work.

Harris also taught them how to recognize a physical cque in their breathing that would signal them to pause during whatever they were talking about for a split second.

A longtime researcher, Dunn said the small number of students they have worked with and the fact that they have only been using the technique since May 2012 means data on its effectiveness has yet to be developed.

But when the two attended the Southeastern Autism Conference in Duluth, Ga., in February and played before and after recordings of their students speaking, “it was amazing to watch the audience’s faces as they listened to the differences in the voices,” Dunn said.

Dunn and Harris are working on a manual of the technique which they hope to publish next year.

For more information, go to http://www.montekids.org/services/leadership/neurology/autism/ or call (914-375-4880) or write the Montefiore Autism Center, 6 Executive Plaza, Suite 297, Yonkers, NY, 11701.

Larry Harris has a new CD available on his website, http://www.harrisopera.com.

http://www.nydailynews.com/new-york/giving-autistic-children-voice-article-1.1316386#ixzz2QXmPt9SD

New Book Highlights A Mother’s Instincts And A Son’s Potential

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“The Spark: A Mother’s Story Of Nurturing Genius” by Kristine Barnett: Review

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You may have heard of Jake Barnett, the autistic boy-genius from Indiana who began taking college courses in astrophysics at age eight, became a paid scientific researcher at 12 and was the subject of a 60 Minutes profile last year at 13. And you may have wondered, as I did, what kind of parents would do that to their kid. In The Spark: A Mother’s Story of Nurturing Genius, you find out exactly what kind of parents would do that — the kind who had no choice.

This engaging memoir by Jake’s mother, Kristine Barnett, follows the development from birth of a remarkable boy who forced his rather ordinary parents — a modest young Amish daycare teacher and her wrong-side-of-the-tracks husband — to become extraordinary. If they hadn’t, this unusual child with an off-the-charts IQ of 189 might have been lost to the world forever, locked up in what Kristine calls “the gaping, gray uncertainty of autism.”

Diagnosed with moderate to severe autism at age two — his developmental delays were textbook — Jake began top-flight therapy from a dedicated phalanx of experts. In fact, therapy took over the family’s lives. “You eat, breathe and sleep autism,” Kristine writes. “Life with an autistic child is a constant race against the clock to do more, more, more.” Yet Jake was doing less. He stopped talking and making eye contact. He seemed interested only in the very obsessions the experts were trying to curb, such as staring for hours at shadows on the wall, looking at alphabet flash cards or hauling around an oversized astronomy book he could scarcely carry

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Against the advice of the experts and initially the wishes of her husband, Kristine mustered the courage to follow her instincts and take her son out of therapy and his special-ed preschool to give him a “normal” summer. She tried building sandcastles, blowing dandelion fluff and making s’mores over the backyard brazier. Jake wasn’t very responsive. But when they lay on the hood of the car and looked up at the night sky, Jake seemed focused and content.

Encouraged, Kristine took him to view the sky through the big telescope at the local observatory, not realizing till it was too late that the evening included a talk by a professor. Hardly an event to take a nonverbal, developmentally delayed preschooler, Kristine thought. But Jake, now almost completely disengaged from the world, suddenly snapped to life, discussing lunar gravities with the prof. He was three and a half.

While this gave Jake’s shocked parents a glimpse into their son’s blazing intellect, life didn’t get any easier. Kristine, with her husband now bowing to her intuition, went to extraordinary lengths to help Jake make friends and get mainstreamed into a regular school. Jake withdrew into a black hole again until a neuropsychologist almost ordered his parents to take Jake out of his grade five classroom, saying, “He is deeply bored, and if you keep him there you will stifle every iota of creativity he has.”

Not only does The Spark give us insights into the fantastically complex world of autism and its effect on families, but it’s a galloping read, full of heart and self-deprecating humour. Kristine is aware that her obsession to find “the spark” not only in Jake but in every one of the children who attend the daycare she runs in her home can get a little over the top: on one occasion she actually brings home a live llama.

She’s also aware that most children with autism aren’t profoundly gifted, as Jake is. But she truly believes every parent can discover and nurture their child’s spark. Her generous spirit has led to her creating successful nonprofit programs for autistic kids and their families in her community. This, despite a host of personal problems of almost biblical proportions: flood, fire, poverty, hunger, a second baby with a life-threatening medical condition, and a stroke at age 30.

Meanwhile Jake, now 14 and set to graduate soon, has thrived at university, loves mentoring fellow students and is working on an original theory in the field of relativity that could one day win him a Nobel Prize.

http://www.thestar.com/entertainment/books/2013/04/12/the_spark_a_mothers_story_of_nurturing_genius_by_kristine_barnett_review.html

Washington D.C.’s Cherry Blossoms, Through The Lens Of Autistic Photographers

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PHOTOGRAPHERS WITH AUTISM FOCUS ON CHERRY BLOSSOMS

WASHINGTON (WUSA9) — The Cherry Blossoms are finally in peak bloom, which means thousands of people spent today taking pictures down at the Tidal Basin.

That includes a group of autistic young men part of the ‘In-Focus Photography Project.’

Brian Depenbrock sees things a little differently than most photographers. The 26-year-old is autistic. But for the last three years he’s been coming here to take pictures of the Cherry Blossoms.

“I like seeing how they turn out,” Depenbrock says.

Ian Paregol founded the In-Focus Photography Project five years ago with the goal of giving these four autistic young men a skill and a business.

They sell their best works.

” The public – whether its a critic or a buyer – can really see through their eyes what the world looks like,” says Paregol.

And that’s what makes their pictures so unique.

They’re a window into the autistic mind which modern medicine is still struggling to comprehend.

Paregol says, “When we see what they’re actually photographing, we can see what they’re honed in on.”

Brian’s honing in on his top client.

He’s been asked to hand pick one of his pictures for the President.

Depenbrock is a bit nervous about it but thinks the President will like the picture he picks.

“I kind of like the picture of the Jefferson Memorial…I think he will like it,” says Depenbrock.

http://www.wusa9.com/news/article/253848/373/Autistic-Photographers-Focus-On-Cherry-Blossoms

“Autism In Love” Kickstarter Project

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“AUTISM IN LOVE” DOCUMENTARY FILM IS RAISING MONEY ON KICKSTARTER

If you’ve been diagnosed with autism spectrum disorder, the perils and pitfalls of dating, relationships and commitment can seem like insurmountable chasms.

How do you apologize to your girlfriend after a fight if you can’t read facial cues? What does physical intimacy look like if you hate being stroked or hugged? These are just some of the questions that people with autism grapple with on a daily basis — and the subject of a new documentary called “Autism In Love.”

Independent filmmakers Matt Fuller and Carolina Groppa in Los Angeles, Calif. have been exploring the issue for the past 18 months, following four people and four couples as they look for love and try to keep it.  Fuller and Groppa posted their production plan to Kickstarter Monday to raise money to finish the film. Fuller and Groppa also posted a compelling preview of the footage they’ve shot so far.

Groppa got the idea for the documentary while working as an administrative assistant for a professor of psychiatry at UCLA medical school. The stories she read about members of the autism community and their romantic adventures quickly became a passion project. She approached friend Matt Fuller (the pair had met at film school at the University of Central Florida) with an idea for a documentary.

To learn more about their project, check out their Kickstarter page.

http://www.huffingtonpost.com/2013/04/10/autism-in-love-documentar_n_3054057.html?1365623192

Shakespeare, Emotions and Autism: A New Study

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Robin Post, the program director of the autism and Shakespeare study at Ohio State University Wexner Medical Center, works with students at an elementary school in Columbus.

AUTISM AND SHAKESPEARE: OHIO STATE RESEARCHERS STUDY HUNTER HEARTBEAT METHOD

Researchers at Ohio State University Wexner Medical Center’s Nisonger Center are working with a group of middle school students in Columbus to see if Shakespeare’s plays can help children with autism spectrum disorders make gains in communication and in understanding and expressing emotions.

The study is based on the Hunter Heartbeat Method, which was developed about 20 years ago by Kelly Hunter, an actress with the Royal Shakespeare Company in London. Hunter’s theory, according to Marc Tassé, director of the Nisonger Center, is that Shakespeare’s work, because of its meter and exaggerated expression of emotion, is particularly well suited for theater interventions for autism.

The Ohio State researchers are using “The Tempest” to teach the study’s 20 participants subtle clues about emotions; they will study the children over the course of 42 weeks to see if the method yields results.

The students “practice how to express emotions differently, and observe how that emotion may present itself differently in the facial reaction and tone of voice of others,” said Tassé, the principal investigator of the study. . “Sometimes that’s a challenge for kids with autism, reading those subtle social cues.”

According to Tassé, Hunter believes the iambic pentameter of Shakespeare’s verse mimics the rhythm of a heartbeat, and each session begins with students tapping their chests. Participants then re-enact scenes from the play to work on expressing emotions.

“They go around the circle and take turns doing an angry voice, with an angry face, and observe the other students and the theater students doing angry, then sad, then happy,” Tassé said.

The study is broken into two groups of 10 students from across the autism spectrum. One group is working with members of the theater department at Ohio State on the Hunter Heartbeat Method for about an hour once a week through next May (with a break for the summer). Members of the other group will receive only the therapy or services they normally would get, Tassé said.

At the end of the study, both groups will be assessed on their use of language in social situations, social skills and ability to recognize others’ emotions. A pilot study last year looked at results in 14 students over the course of 10 weeks. In that study, Tassé said, researchers noticed significant improvements in communication, peer relations and adaptation skills.

http://www.washingtonpost.com/lifestyle/on-parenting/autism-and-shakespeare-ohio-state-researchers-study-hunter-heartbeat-method/2013/04/09/843cc67e-9003-11e2-9abd-e4c5c9dc5e90_story.html

The Legend Of Xena, Warrior Puppy, And Her Best Friend Jonny

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XENA THE WARRIOR PUPPY AND BOY WITH AUTISM: A MATCH MADE IN HEAVEN

 Click this link to view the associated video:

http://www.11alive.com/video/default.aspx?bctid=2289703519001

JOHNS CREEK, Ga. — A puppy, thrown away and left for dead on the side of a DeKalb County street, almost starved to death.

Seven months later, she is living up to the name her rescuers gave her — Xena the Warrior Puppy.

She is alive, well, and working miracles for all in her life.

One miracle is that Xena survived the abuse.

Another is what she is now doing for other abused animals.

And the biggest miracle is what Xena is doing for the little boy in Johns Creek with autism whose family just adopted her:

This just might be a match made in heaven.

Tuesday afternoon, Xena the Warrior Puppy was running around the yard of her new home in Johns Creek with her new best friend, Jonny Hickey.

How far they’ve both come. Together.

In September, Xena was near death, a victim of severe neglect.

The rescue group “Friends of DeKalb Animals” found Xena and somehow was able to nurse her back to health.

At a fundraiser in November, 11Alive News shot some video of Xena, wagging her tail, nuzzling up to the people around her, healthier and stronger.  Xena’s miraculous recovery had made her an international Facebook sensation, and she was raising tens of thousands of dollars for the care of other abused animals.

And at that fundraiser in November, Xena ran straight to two people she didn’t know, a little boy and his dad, and “introduced” herself.

The news camera caught a glimpse of it, the photographer not knowing, then, that the father and son Xena was greeting was Jonny and his dad.

Jonny’s autism had made him withdrawn, reluctant to speak and interact with others.

He fell in love with Xena.

And she fell in love with him.

And in late March, with Xena fully recovered and ready for adoption, she moved in with Jonny and his family.

The two became inseparable.

Suddenly Jonny is a chatterbox.

And he wanted his mom, Linda Hickey, to make a YouTube video of him telling the world about the month of April — how did Jonny know it is “autism awareness” month, and it is also “prevention of cruelty to animals” month?

“My name is Jonny,” he says on the video, “and this is my puppy, Xena. Well, my Xena was hurt really bad. By some not-so-nice people. And I have autism. So I think we make a pretty perfect team to spread the word to be nice to animals, and nice to kids like me.”

How far they’ve come, together. A match made in heaven.

On April 21, Friends of DeKalb Animals is holding another fundraiser, at Fleur’tee Bee Boutique, 1440 Dutch Valley Place, NE, in Atlanta, from 2pm to 5pm. Xena will be there, one of the stars of the event’s “kissing booth.”

Lynn Herron of Friends of DeKalb Animals told 11Alive News Tuesday that Xena, and her story of heartbreaking, near-fatal suffering, and her recovery, have drawn attention to the work of her organization rescuiing abused, abandoned and neglected animals. Herron said people who have followed Xena’s Facebook page have donated about $30,000, so far, which has made it possible for Herron to establish the Xena Shelter Fund for the most severely abused and injured animals, like Xena was.

Herron said DeKalb County Police have not yet been able to find out who abused Xena, but the case remains open, with a reward of $2,500 to anyone who helps lead police to the abuser:

DeKalb County Police Sgt. Tim Medlin: 404-294-2645
DeKalb Animal Control: 404-294-2996

http://www.11alive.com/news/article/287556/186/Xena-the-Warrior-Puppy-and-boy-with-autism-match-made-in-heaven

Asperger’s Are Us: Absurdist Humor At It’s Finest…Or, Not…They Don’t Really Care

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 The cast: Comedy group Asperger’s Are Us members Ethan Finlan, left, Noah Britton, New Michael Ingemi and Jack Hanke.

Jack Hanke, 18, arrived at rehearsal wearing a giant sombrero and green kimono. Noah Britton, 29, took off his pants mid-practice, explaining that they still stank from last night’s concert. He ran through the rest of his comedy troupe’s practice wearing boxers, and the group’s signature T-shirt, which reads: “I don’t want your pity.”

Britton, Hanke and the other two members of Asperger’s Are Us don’t care who thinks they’re weird. Or even funny. They think they’re hilarious. And if others don’t, who’s the one with the disability?

Many traits the public has long found engaging or amusing have their roots — perhaps surprisingly — in Asperger’s. The absurdity of Monty Python, the flat demeanor of Star Trek‘s Mr. Spock and the awkwardness of Andy Kaufman, are all common Aspergian traits. Dr. Sheldon Cooper on Big Bang Theory gets laughs for those characteristics, too.

“In the last few years, Asperger’s has become recognized as a foundation for some elements of comedy,” said John Elder Robison, a nationally renowned Asperger’s advocate, and author of Be Different. “All of a sudden there is a broad public awareness that the reason for behavioral differences in those characters would probably be called Asperger’s.”

Common traits of Asperger’s and their consequences:

Intense focus – can limit ability to multitask, as well as enable expertise.

Hypersensitivity to sensory input, change and human interactions – can lead to being overwhelmed by sights, sounds and stresses, as well new observations, insights

Inwardly directed – often fail to notice the impact of their behavior on others; capable of being extremely insightful.

Don’t conform to social norms , often because they can’t understand them – can lead to social isolation, as well as creativity, originality

Linear, literal thinking – can lead to confusion about metaphors and sarcasm, and difficulty learning without ordered instruction, as well as bluntness, an inability to lie, and desire for fairness.

That growing recognition helps groups such as the Boston-based Asperger’s Are Us, which is getting gigs right now because it’s Autism Awareness Month. They’re grateful for that, but as their shirts suggest, the men aren’t seeking compassion.

“We’d much rather (the audience) appreciate us as comedians than as people who’ve overcome adversity,” said Britton, the group’s informal leader since he was the others’ camp counselor seven summers ago.

Asperger’s, which is defined by social awkwardness and repetitive behaviors, is part of the broader “Autism Spectrum,” of related disorders.

Members of Asperger’s Are Us revel in absurdist humor, like Kaufman’s and Monty Python’s. Some of their own jokes get laughs because their delivery is so dead-pan, some because they offer insights into male adolescence, and some because they’re just plain wacky, like a skit in which one member says another has gotten him pregnant and the other replies, “You can’t be pregnant, I’m bubble-wrap.”

There’s been little academic research on what makes people laugh, and virtually none on the connection between autism and humor, several scientists said. And maybe that doesn’t matter.

“You don’t want to rely on academics to tell you whether something is funny,” said Simon Baron-Cohen, a leading autism researcher in England and cousin to comedian Sacha Baron Cohen. “Ultimately you want to look at the audience response.”

The group’s biggest show, held last summer in an old movie theater, was received with a standing ovation. Several audience members described the group’s humor as “fresh,” and “raw.”

In person, group members toss off endless puns and bathroom jokes, cracking one another up. They still laugh at the same gags they thought up as campers. One benefit of Asperger’s, they say, is that they appreciate a joke just as much the 40th time as the first.

They rib one another about the obsessions, or perseverations, common to people with Asperger’s. One skit lampoons 19-year-old group member Ethan Finlan’s obsession with train schedules.

That transportation expertise comes in handy, though, when planning group rehearsals, they said, and other Aspergian obsessions can be useful, too. Britton’s passion for psychology propelled him through a master’s degree and into a teaching position at a local community college.

Riffing recently on the ubiquitous jigsaw puzzle-themed autism awareness logo, the group’s fourth member, New Michael Ingemi, 19, wonders, “What’s it supposed to imply? That we’re missing a piece?” (Ingemi calls himself “New Michael” because his father’s name is Michael too. )

“We’re just differently assembled,” Hanke responds.

Obviously, not everyone with autism has this group’s quick wit and urge to perform. Many on the spectrum can’t speak; others struggle to hold a simple conversation.

June Groden, who runs a Rhode Island network of autism services, recently began training students in conventional humor, to help them fit in better socially. Young children learn to be “goofier” by singing silly songs. Older students practice delivering jokes, learning to appreciate when others laugh with them.

“We want these kids to try and learn at least some mainstream humor and get something out of it,” she said.

Britton, appointed last month to the federal Interagency Autism Coordinating Committee, a congressionally mandated advisory group, says he has a much easier time sharing jokes with others on the spectrum than with “neurotypicals.”

When people ask Britton to describe the purpose of his comedy troupe, he knows they’re expecting him to say something like “raise awareness about autism.” Instead, he once responded: “We want to sail a flotilla to Spain. We’ve been building all these boats and we just want to get out there.”

http://usatoday30.usatoday.com/news/health/wellness/story/2012-04-12/Aspergers-Are-Us-comedy-troupe/54256940/1

Tales From The Big Five-Oh

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Fifty freakin’ years old.  The Big Five-Oh.  Half a Century.

That milestone was passed this weekend.  Not that I mind; I have always seen it as a number.  Not as good as 32, mind you, but certainly better than 72.  I never actually thought about turning fifty; I have always felt old (some days more than others), or rather, many times felt like a young man in an old man’s body.  50-year-old me still like things that Younger Me liked: toys, comics, sci-fi, music, cars, cartoons, going to the movies, etc.

It started on Friday, as I sat down with a cup of coffee at Starbucks and I heard a favorite song from the ’80’s: Yaz singing “Only You” which let me reminisce about my twenties; finishing school, friends I made while working in Bloomingdale’s, starting a career as an EMT, moving into my first apartment without roommates, etc.  Real rite-of-passage stuff for twentysomething-year-old me.

Back in the present, Mike took me to the movies Friday night.  We had made plans months ago when he heard that “Jurassic Park 3D” was coming to theaters on April 5th.  He asked me if I wanted to go with him.  Jurassic Park is a big deal for Mike; it is the movie that really brought dinosaurs to life for him.  The movie that opened up that door to learning–dinosaurs were the key that Mike’s teachers needed to relate to him, and have him relate to other things: dinosaur stories gave him vocabulary and speech, dinosaur pictures gave him visual cues, guidelines for drawing and coloring and attention to details. Learning more about dinosaurs awakened his curiosity to learn about other animals, photography and video, and so much more.  Of course I would go; movie night wound up becoming my birthday gift– a night a boy and his dad could spend together.

It was pure juvenile joy: wearing 3D glasses, eating popcorn, pretzels, M&M’s, and Twizzlers, and having a good ‘ol scary time.  The previews also allowed us to plan for future movie ventures: “Despicable Me 2” and “Cloudy With A Chance of Meatballs 2″ are definitely in our future.  I also want to see “Man Of Steel” but Mike likes Spider-man better, so “Amazing Spider-man 2” is more likely to make that list.

Cloudy with a Chance of Meatballs (soundtrack)

The Amazing Spider-Man

 

 

 

 

 

 

 

Mike and I had originally planned to go to the movies and lunch on my birthday (Saturday) but some reconfiguring by my wife changed that to a family lunch instead.  Mike had picked out the restaurant, Miller’s Ale House in Levittown, because of a good experience there on a school trip.  It was a nice place, with good food and flat-screen TVs all around.  I noticed that Mike took to watching an Ultimate Fighting match.  It may be that he was non-plussed with the other choices being shown: the Mets, a women’s college softball game and a soccer match.  I asked if he had a favorite team, and he did not, but did check to see if I still like the Yankees.  When his brother asked him about the Ultimate Fighting match, he thought it was like boxing, but clearly saw that it was different, and was a little mesmerized by what he was watching.  Maybe this was a budding new interest taking hold.

We congratulated Mike for making an excellent choice for lunch, which was highlighted by two desserts which we shared: ‘Capt. Jack’s Buried Treasure’ and ‘The Chocolate Pounder’ (both soooo good).

Younger Me would have never thought about turning 50, and certainly didn’t know about Autism.  I like to think that the Younger Me, now armed with wonderful experiences and memories, along with my family, helped me reach this point in my life; with passion, enthusiasm and a deep appreciation for all that I have.  And a optimistic outlook for what the future has in store for all of us.

Bring on the next fifty.

Putting A Face On Autism In Salem, Massachusetts

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Salem —
They are bright and talented students, warm and loving friends, and with support and acceptance can be fully integrated and productive members of society. They are the individuals on the autism spectrum, and they have a voice in Salem.
That was the message sent on World Autism Awareness Day, celebrated every year on April 2 since it was instituted by the United Nations in 1989. In Salem, celebrations included an Autism Awareness walk around Salem Common, spearheaded by Parents United of Salem and the No Place for Hate Committee.
“The response to the walk, as well as the Autism Awareness Fair that will be held on the Common this Saturday, has been overwhelming,” said Leanne Schild, one of the vice presidents of Parents United of Salem and the mother of an autistic son, Alex, now 7. “By promoting awareness, we teach people to have compassion for those who act different and make it easier for parents and kids to be open and honest about autism.”
Alex was diagnosed at age 2, after Schild noticed some differences between Alex’s development and that of his twin sister, Maria.
Though according to the Centers for Disease Control, as many as one in 88 children are diagnosed with autism every year, much is still unknown about the condition. Individuals on the autism spectrum have different or heightened perceptions of certain sounds and textures, which can result in behaviors that others do not recognize or characterize as abnormal.
Though some individuals on the autism spectrum never attain independence or develop full communication, others – particularly those who receive extensive early intervention, and those fortunate enough to find love and acceptance – go on to lead full lives. Famous people on the autism spectrum include actress Darryl Hannah and Temple Grandin, an animal-rights advocate and designer of ethical cattle slaughterhouses. Grandin was portrayed in an HBO film by Claire Danes.
This is the second year that Parents United of Salem has sponsored an autism walk. Last December, they also sponsored the first ever Festivus 5K, which drew 500 walkers and raised approximately $10,000 for The Autism Society.
“My son, Trevor, was diagnosed at age 5,” said Cindy Johnson, who marched in the walk and was one of the coordinators of the Festivus 5K. “He had difficulty making eye contact and a hard time talking to his peers. I remember having him in the pediatrician’s office asking if he was just a shy child or if there was something more, when he saw a ripped piece of paper on the floor. He looked at it and said, ‘Mom, that’s Idaho!’”
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Like many on the autism spectrum, Trevor Johnson exhibited narrow and deep interests in a number of highly technical subjects at an early age. But unlike many, he always found a loving and accepting community.
“Trevor went through a phase where he was very into studying transit maps,” Johnson said. “All our friends, family members, and Trevor’s friends, whenever they went on a trip, would bring him back transit maps of Paris and England. People have embraced our family with such kindness.”
Nonetheless, great strides must still be made, both in the attitudes of people who are not aware of the needs of those on the autism spectrum, and in the services made available to them.
“You definitely have to be a warrior parent,” Johnson said. “There’s a level of complexity that comes with raising any child, and it’s compounded when you have to fight to make sure that schools are providing services, that the help is actually getting to your child.”
Even more pervasive, however, is the tendency to marginalize those on the autism spectrum as sufferers from a disease. This is a charge that has even been leveled against one of the largest autism charities in the nation, Autism Speaks, which coined the “Light it up Blue” program and which autism advocates say places undue emphasis on finding a “cure” for what many believe is a valuable and intrinsic part of their personalities.
“To me, the blue lights and World Autism Awareness Day are bigger than any one organization,” Schild said. “They are about increasing acceptance and improving the quality of life for those on the autism spectrum.”
Many of the solutions advocated by adults on the autism spectrum who joined the walk are changes in disabilities and law enforcement procedures that would benefit both autistic individuals and the community at large.
“One of the biggest problems is the difficulty autistic people have in applying for disability benefits under the ADA,” said Sarah Chan-Aldebol, 25, who lives in Salem. “It’s not like a broken leg. You can’t always see it. But it completely affects the way you interact with the world.”
After experiencing a lack of understanding from peers, Chan-Aldebol was homeschooled before attaining a degree in sociology from UMass-Lowell.
“I was lucky in that I got early intervention. Not many in my generation did,” Chan-Aldebol said. “Even today, autism can be presented in TV ads as something that is wrong with kids, that parents complain about. The key is being supportive of kids.”
Ryan Tilton, 26, said that another key change in the lives of autistic young people in Salem would be the adoption of the Mason alert, a police tool that would add crucial information to Amber alerts in the event of a missing autistic child.
“Unlike other kids, autistic kids won’t wander to a friend’s house,” Tilton said. “The alert would provide police departments with photos, descriptions of whether the child is verbal or nonverbal, how well they respond to verbal commands, and locations where they are likely to wander to.”
Tilton also argued for increased access to service dogs for autistic people.
“Dogs can calm autistic people during situations of sensory overload, which makes it possible to attend more public events,” Tilton said. “Dogs are life-changing.”
The full spectrum of services required by individuals on the autism spectrum differ with each specific case, but of importance to all, attendees at the walk stressed, was the support and acceptance of friends, family, and community.
“We’ve had Alex in thousands of hours of applied behavioral analysis, social and speech therapy since he was 2 1/2. He’s done so well that he barely even needs the services we once sacrificed so much for. I couldn’t be a prouder parent,” Schild said. “I would not change a single thing about my son, who is the kindest, sweetest boy I have ever known. My deepest hope is that the world – which is so often so cruel – will be as kind and accepting.”
For more information on Saturday’s Autism Awareness Fair, visit salem.com.

Showing the faces of autism – This Just In – Salem, Massachusetts – Salem Gazette http://www.wickedlocal.com/salem/newsnow/x846079260/Showing-the-faces-of-autism#ixzz2PbaEQdOh