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Mark Bertin, M.D.: Autism: Early Intervention Makes A BIG Difference

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.


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Exclusive: Mom Who Attempted To Kill Herself And Autistic Daughter Speaks Out From Prison

Kelli Stapleton, the Michigan mom accused of attempting to kill her teenage daughter who suffers from autism, speaks with Dr. Phil from prison. How could a loving mother think "going to heaven with her daughter" was the only option, and what really happened in September 2013 when Kelli lit two charcoal grills inside a closed van?

In the preview video above, Kelli describes how being in jail has been liberating in some ways. She tells Dr. Phil, "The jail of Benzie County has been a much kinder warden than the jail of autism has been."

The interview airs on Monday, September 15 and continues on Tuesday, September 16, when Dr. Phil also speaks with Kelli's husband Matt, who has since filed for divorce. Check local listings here.

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Eliot Borenstein: Please Segregate My Special Needs Child

To all the well-meaning people who see inclusion as the only desirable goal for special needs children, I say: thanks, but no thanks.

In an article on time.com entitled "Don't Segregate my Special Needs Child," Lizza Long, best known for her powerful essay, "I Am Adam Lanza's Mother," laments that so many parents of neurotypical children are intolerant of children like hers and mine, whose differences can be seen as disruptive. When she complains that local school districts and educational officials are more often adversaries than advocates for special needs children, she's absolutely right.

And there is no doubt that the integration of children with different learning styles and neurological profiles can be a good thing for all the students involved. Simply by interacting with developmentally disabled children on a daily basis, typical children can grow to be far more tolerant than their anxious parents.

But when Long dismisses the alternative to inclusion as "segregation" that "condemn[s] our children to prison," she is ironically making the mistake I usually associate with people who are unfamiliar with the developmentally disabled: She lumps all of them into the same group. Yet there's a reason we say "special needs" in the plural rather than the singular. Needs vary widely, as do the means for meeting them.

My 11-year-old son Louis is on the autism spectrum. There used to be a slightly more descriptive term for his condition, but the latest edition of the bible of psychiatric disorders, the DSM-V, dispensed with such niceties as "autistic disorder," or "Asperger's," let alone the one that applied to Louis: "Pervasive Developmental Disorder (Not Otherwise Specified)" -- the diagnostic equivalent of "none of the above." In my more charitable moments, I see this decision not as a desire to see all people with autism as essentially the same, but rather as a recognition that any attempt to develop a reasonable or consistent taxonomy is doomed to failure.

Every year, our school district tries to show that it has a classroom in which Louis could thrive. Every year, we hope this might actually be true; so far, that has not been the case. Louis, along with many of the children who attend his private school for children on the spectrum, cannot tolerate crowds. Noise reduces him to tears, while bright lights leave him disoriented. If he doesn't have regular sensory input (ranging from the use of special equipment to simply moving around at frequent intervals), he not only can't learn -- he can't even begin to function. The disregulation that starts under such circumstances can continue for days.

Inclusion is a wonderful idea, and should always be the goal whenever it is reasonable. But inclusion must not be treated as an inflexible ideology. Long employs the vocabulary that is key to the Individuals with Disabilities Education Act (IDEA): Children must have an "appropriate" education. Sometimes "appropriate" will also mean "separate."


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The Inspiring Relationship Between A Single Dad And His Nonverbal Son

Ken Siri's alarm rings at 6:30 a.m., and then, the single dad of a nonverbal 15-year-old with autism spends the next few hours bathing his son, Alex, and getting him dressed. He also makes all of his son's meals because Alex has Ulcerative Colitis which calls for a strict diet.

Then, Alex is bussed to his public school in Manhattan, and returns home by 3:00 pm. Like his fellow stay-at-home and single parents, Ken must get everything done -- work, errands, fitness -- during the hours Alex is at school. And though he is able to make a living, most of Ken's time is spent caring for Alex.

Ken and Alex are the subjects of a documentary called "Big Daddy Autism." Half of the film is completed, and the team's production team, led by director and producer Aaron Feinstein, raised $31,228 ($6,000 more than their goal) through an IndieGoGo campaign to finish it.

"New York City, with all its beauty and chaos, is the backdrop for this tale of two men searching for ways to connect with the world around them," the film's description reads. "Ken and Alex show how determination and a positive attitude can overcome the most challenging circumstances; everyday, they demonstrate how to live life with heart, passion and beaming smiles."

Ken wants to be honest about the challenges involved with raising Alex, he said in an interview with The Huffington Post, but hopes to convey positivity, despite them. He also wants to stress the importance of fathers' involvement. "I wanted to show that dads should be, can be, and need to be more involved than what the perception is," he said.

alex and ken

Alex was first diagnosed with autism in 2002. A year earlier, on 9/11, the then 3-year-old was able to tell his parents, “Turn the TV off, that’s scary” after the Towers fell. But two months later the toddler's speech regressed; he was only able to say a word here or there. Over the course of the next year, it disappeared entirely.

When doctors said Alex had autism, Ken was somewhat relieved because his son had "a label he could work with." Still, Dad wondered, "What is this? And what can we do about it?"

alex siri

Alex Siri in 2001.

At the time, Ken and Alex's mother were already divorced, so Alex traveled back and forth between New York, where Ken lived, and D.C., where Mom was. Eventually, the two parents agreed that Alex would live with Ken permanently, and Dad would obtain sole custody so that he could make all medical decisions.

Ken was working as a health care analyst on Wall Street, but quickly realized his lifestyle was not conducive to raising his son solo. He became a writer -- authoring books about autism -- and founded a financial consulting company which he runs out of his home, to allow for more flexibility.

ken and alex running

Now, Ken hopes that sharing his story will shed light on a side of autism that most are unfamiliar with. On TV or in the news, kids with autism are generally portrayed as quirky or geeky, he said. But given that 25 percent of the autism community is nonverbal, he feels the struggles that come with raising a child who falls into that category should be represented.

To provide context for what life is like for many autism parents, he cited a 2009 study which found that the stress level of moms of ASD kids is comparable to that of a combat soldier. "You're basically under fire 24/7, but it’s not like you get rotated out or the war ever ends. And I don’t like to use the war analogy, but that’s the kind of stress, and I don’t think that’s really portrayed," he told HuffPost.

In the last year, caring for Alex after school has become easier because Ken finally received a Medicaid Waiver which provides services to the disabled. With that help, Alex and Ken found Melanie, a caregiver who is with Alex six days per week. Finding a sitter who was equipped to look after Alex -- considering that he's nonverbal and has run away from home -- was not easy, Ken said. Having Melanie has made his day-to-day less stressful.

Technology, too, has been a life raft for Alex and Ken. The teenager uses an iPad app called Proloquo2Go, to communicate. It has a library of images and phrases so that users can create sentences. If Alex wants an apple, for example, he could select the "I want" option, then point to an apple, and the app would say out loud, "I want an apple."

The trailer for the film, which you can watch above, is a raw glimpse into all of the joys and struggles involved in raising Alex. Once complete, Ken hopes their story will inspire, educate, and also bring comfort to parents in similar situations.

And to those parents, Ken has just two words of advice: "Be present."


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Pamela Glasner: Golden Door International Film Festival: The Stuff of Dreams

"I lift my lamp beside the golden door." That final and very famous line from the poem engraved on the Statue of Liberty was the inspiration behind the birth of the Golden Door International Film Festival of Jersey City. Not just because of the name, but because of everything it embodies.

Imagine the immeasurable courage it takes to lift yourself up by your bootstraps, leave behind absolutely everything you've ever known, and travel thousands of miles to a place you've never been, with no way of really knowing if it's a good decision or bad ... and no guarantee that what you'll find will be any better than what you left behind. Or even as good as.

The Statue of Liberty was constructed as a tribute to the men, women, and children who risked everything for a dream, based on little more than faith and hope.

It is that same spirit which was foremost in festival founder and director Bill Sorvino's mind when he dreamed up the Golden Door International Film Festival ... and 'dream it' he did, quite literally. Then eighteen months, one hundred and fifty submissions, and forty-three official selections later, his dream came to fruition.

But Golden Door is not your average film fest. Yes, it's about movies. But it is also about so much more. It's about vision. And resourcefulness. And compassion. And freedom. It's about seeing that one shot at a better life and grabbing it, no matter how frightening, no matter how intimidating. It's about looking directly into the unknown and going for it with everything you've got. It's ... well ... simply put ... it's everything. And that's why this festival not only screens independent films exclusively, but reaffirms the heart and soul of what it is to be human, and what it is to be part of a community, by providing scholarships in 'the arts' to young students with dreams of their own, and also, via their own philanthropic initiative, by supporting the surprisingly-widespread but widely-misunderstood issue of Autism.

In fact, this year, the two opening films, "Six Letter Word" (Lisanne Sartor, director) , and "The Odd Way Home" (Rajeev Nirmalakhandan, director), both address the disorder of Autism which afflicts approximately 544,000 Americans (per CureResearch.com). Point of interest, Rumer Willis, daughter of Bruce Willis and Demi Moore, does a delightful job starring in both of these vitally-important films.

None of this came about by accident. It happened because the man behind it all, actor Bill Sorvino, grew up with a belief system firmly rooted in family, community, hard work, dedication, love, and loyalty. Born in Jersey City, coming from a family of Italian immigrants, and growing up enmeshed in the entertainment industry, it's no surprise he feels the way he does.

I must say, as a woman who is passionate about writing, it's easy to spot others who feel the same way about their own craft. That's what drew me to Bill and this festival to begin with, and why I admire him so much. He loves the festival and all it stands for, but he is, first and foremost, an actor. He adores the craft and, while he does involve himself in other things because they are important, the one thing he sees himself doing for the rest of his life is acting. He has performed alongside such industry greats as Paul Sorvino (his uncle), Daniel Roebuck, Eric Roberts, and Sally Kellerman, and has accumulated a bevy of awards and nominations over the past eight years. (Below: Paul Sorvino, Bill Sorvino, and Michele Sorvino)

And that's why he does this: he loves the city and he loves the industry, and he is passionate about wanting to provide opportunities for others to live the same dream.

This year, throughout Jersey City, in eight different venues, including the stunning and historic Landmark Loew's Theater in Journal Square Plaza, the Golden Door International Film Festival will screen an impressive ninety-two films, present three seminars, host three galas, two red carpet events, and three after-parties, and provide an all-day filmmakers' lounge at the Grove Square Bistro so industry professionals can network and negotiate.

It is going to be my great privilege, as the official writer of the festival, to be there all four days, attend all of the events, and meet and speak with a whole host of brilliant, talented men and women, including Bill's cousin, Oscar-winning Mira Sorvino, who is also one of the festival's directors. I cannot wait!

The fest will take place on Thursday, September 18th through Sunday, September 21st, with the Tommy Hilfiger-sponsored Opening Gala on Tuesday, September 16th. For more information, please visit the official website: http://goldendoorfilmfestival.org/.

Pamela S. K. Glasner is a published author, filmmaker, social advocate, and contributor to Cabaret Scenes Magazine. Learn more about Ms. Glasner at http://www.starjackentertainment.com/ or Facebook https://www.facebook.com/pamela.glasner.

Copyright by Pamela S. K. Glasner © 2014, All Rights Reserved


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