Autism Speaks

Keeping It Real: Teaching Autistic Children Through The Experiences Of Autistic Adults

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by Todd Drezner, via

If you are the parent of an autistic child, you may be surprised to hear that you are not actually living. Yes, I’m sure it’s a shock, but you can find this and many other startling statements about autism in a recent article written by Suzanne Wright, the co-founder of Autism Speaks.

According to Wright, families with an autistic child, “… are not living. They are existing.” She conjures a world in which “we’ve for the most part lost touch with 3 million American children” who are autistic. And she claims that for families with autistic children, “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”

The world that Wright presents is a fantasy. Yes, autistic people face challenges, some of them severe, but to present their lives as nothing more than unrelenting tragedy and despair is simply dishonest.  And stirring up fear of and pity for autistic people doesn’t actually do anything to help them live lives that are far more nuanced than Wright would have it.

Given the disdain that Wright’s fantasy world shows toward autistic lives, you might not expect Autism Speaks to be a funder of one of the best recent support programs for autistic children. And yet, that’s exactly what happened with Keeping it Real, a website partially funded by a Family Services Community Grant from Autism Speaks. In contrast to Wright’s vision, this site shows how the lives of autistic children can be improved — with the help of autistic adults. Keeping it Real has something to teach its funder.

The site was developed in part by Lauren Hough, Kristie Koenig, and Aaron Lanou of New York University’s Steinhardt ASD Nest Support Project, which provides training and on-site support for professionals working in the ASD Nest program, New York City’s inclusion program for autistic students. Keeping it Real offers lesson plans, activities, and video clips for educators, therapists, and kids on the autism spectrum.

According to Hough, “We wanted to have strength-based modules that we could use to support our middle school students with autism. We were interested in activities and materials that would empower our students and help them find their strengths and voices.”

But to create those materials, the ASD Nest Support Project did not turn only to education professionals. As NYU’s Koenig explains, “True partnerships between academics, professionals and autistic adults will be the way to improve services and supports for all autistic individuals and the autistic voice has to be central.”

For that reason, to create the website, NYU partnered with three autistic adult self-advocates: Jesse Saperstein, who developed an anti-bullying curriculum; Dr. Stephen Shore who helps students recognize and build on their strengths; and Zosia Zaks, who teaches self-advocacy. (Full disclosure: I am partnering with the NYU faculty and the self-advocates on an unrelated autism project.)

Zaks, who provides counseling services to autistic people and their families, learned the importance of self-advocacy from personal experience. “I had very little self-awareness when I was a teenager,” he said. “It’s not just about challenges. I had lots of strengths too, but no language. I learned to advocate for myself only by trial and error. But that took up a lot of energy and I missed out on so many opportunities.”

To help autistic children learn from his experience, Zaks created materials explaining what self-advocacy is and video examples of people advocating for themselves both at school and at work. Zaks believes that self-advocacy is a vital skill because, “The Americans with Disabilities act is a self-advocacy law. Once you are an adult, it is your responsibility to ask for and to arrange the accommodations you need to work or to live in the community.” And, as Zaks points out, self-advocacy is not about opting out of the community, but rather opting in. As he puts it:

Let’s say you have a sensory issue at work with the intense overhead lights. If you don’t even know what sensory issues are in general, and if you have no idea how to manage your specific sensory issues, you’re going to encounter huge barriers to success. Advocacy skills enable you to be proactive. What do you need to get back to work?

Like Zaks, Jesse Saperstein came to an interest in bullying through personal experience. Saperstein, the author of a memoir about life with Asperger’s, says, “A lot of what I do is cathartic and my curriculum is designed to give students what I needed as a young child and what would have made a difference.”

Interestingly, Saperstein’s personal experiences include not only an extensive history of being bullied, but also an example of when he bullied a less-popular student. Having been both victim and perpetrator, Saperstein brings expertise to Keeping it Real lessons on cyber bullying, blaming the victim, and bystanders.

In addition to his work for Keeping it Real, Saperstein speaks about bullying at schools and other organizations. He notes, “My presence is the first time the students are seeing an adult version of their fellow classmates who are often isolated or made fun of on a daily basis.” To show them what life as an autistic adult can be like, Saperstein designs his work “to flaunt my eccentricities, and I typically show off silly props like a paddleball, cup-and-ball toy, and bouncy balls.” He believes that “students are not given enough credit for their innate compassion. They simply need enough resources to promote this new consciousness.”

Stephen Shore’s work on Keeping it Real is only one of the many autism projects on which he works. An Assistant Professor of Special Education at Adelphi University, Shore openly discloses being on the autism spectrum. He comments, “Increasingly, I see individuals with autism achieving great success, fulfillment, and productivity when encouraged to follow their strengths — to the point of becoming regional, national, and sometimes worldwide experts in their area of interests.”

The work of Saperstein, Shore, Zaks, and other autistic self-advocates is inspiring. And if Autism Speaks was best known for partnering with autistic adults and funding projects like Keeping it Real, it could be an inspiring organization. Unfortunately, whatever good work Autism Speaks did in this instance is completely undermined by the tone-deaf words of Suzanne Wright. Even worse, Autism Speaks has a long history of excluding autistic voices and promoting fear and pity of autism.

An organization with the resources of Autism Speaks that was focused on working with the autistic community could fund countless projects like Keeping it Real. Rather than dismissing the lives of autistic children as hopeless, such an organization could partner with self-advocates to offer important resources that would help autistic children develop vital skills they need to make their way in the world.

Sadly, though, such an organization is currently as much a fantasy as Wright’s despair-filled world. Autism Speaks remains an organization largely opposed by the very community it claims to serve.

Fortunately, we have Keeping it Real — a site that stands as a rebuke to the founder of one of its funders. It’s an odd position to be in, but I’m glad the site is there. It presumes that autistic children have strengths, and it sets out to build on them. It does so with the best resource available to children on the autism spectrum — autistic adults. Their work will keep it real and make it better.


Combating The Stigma Of Autism

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Parents of autistic children, like Jaewoo Kwak, 8, can face stereotypes and misconceptions in the Korean-American community.

Autism, or the fear of it, chased one Korean mother from her Queens church. “I very carefully told the mom: ‘I think your child is a little different. Why don’t you take the test for autism?’ ” said the Rev. Joy Lee of the Korean Presbyterian Church in Flushing. “She told me, ‘Oh no, my child will be O.K.’ So then she quit. After that, she did not pick up the phone.”

Ms. Ko said her own mother refused to discuss Jaewoo with relatives and friends after he was given his diagnosis.

It crushed another Korean mother — twice. First, she said, when her son received the diagnosis, and again when friends saw it as a sign that she herself was sick. To cure him, they said, she needed psychotherapy.

Sun Young Ko, of Forest Hills, whose 8-year-old son, Jaewoo Kwak, was given a diagnosis of autism 18 months ago, said her own mother refused to discuss her grandson with relatives or friends. “She’s kind of hiding,” Ms. Ko said.

Raising an autistic child is hard enough, let alone raising one in a culture in which the stigma surrounding autism still runs high. Now, inspired by a 2011 study of a South Korean city that found relatively high rates of autism, a leading advocacy group is teaming with churches, doctors, schools and news organizations in Flushing, trying gingerly to bring Korean parents around to the idea that if there is something unusual about their child, concealing it and avoiding help are absolutely the wrong things to do.

“More so than other populations, Korean-Americans really measure their own self-worth, and the worth of the family, in terms of what the child is able to achieve and what the child means to the family,” said Roy Richard Grinker, a professor of anthropology at George Washington University and the senior author of the South Korea study.

“If I have a child with autism, there is no effect on our house value, on the ability to make friends and on an ability to get promoted at work,” said Dr. Grinker, who wrote the bookUnstrange Minds: Remapping the World of Autism” about life with his autistic daughter, Isabel, now 21. “A lot of Korean families fear that.”

It is a crucial moment for autism across the United States. The number of children who receive a diagnosis of autism has been rising for years, without any consensus about why, other than increased awareness of the condition. At the same time, autism itself is being redefined: the newest edition of the country’s manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger syndrome, under the umbrella of “autism spectrum disorder.” Some experts have predicted the change will lead to fewer diagnoses, and hence cuts in public spending on therapy and special education.

In New York City, the number of public school students classified as having autism this year, 10,199, or roughly 1 percent of enrolled students, is up 50 percent from four years ago, according to the city’s Education Department. Diagnoses among Asian students have also jumped. But while they make up 16 percent of the school system, they account for only 8 percent of those with autism diagnoses.

The South Korea study, which was financed by Autism Speaks, the same advocacy group behind the Queens effort, screened 55,000 students in the Ilsan district of the city of Goyang. Researchers found that 2 percent of them were autistic, but that two-thirds of those students had not previously received a diagnosis or any psychological or special education services. The prevalence was surprising, because it was nearly twice the ratereported in the United States, according to the Centers for Disease Control and Prevention. A similar study is under way in South Carolina.

The Korea study attributed the large number of undiagnosed cases to the stigma of autism. In recent interviews, sometimes through translators, Korean mothers of autistic children in the New York area opened up about their experiences. Several said the diagnosis strained their marriages. One, Mee Hee Kim, said it contributed to her divorce. The mothers also described the subtle ways that they and their children were shut out of normal social or familial encounters, a problem parents from many cultures report, or how they isolated themselves, retreating from invitations to dinner parties or play dates.

Some also worried that their autistic children’s siblings would struggle to find spouses in the Korean community. Ms. Ko, 42, the mother of Jaewoo, said the sadness led her to contemplate suicide, though she never attempted it.

Often, a diagnosis leads to guilt.

“In my experience, so many people ask me: ‘Did you do something wrong? Do you guys fight each other in front of the kids?’ ” said Anna Im, the mother of a 14-year-old autistic boy. “Koreans believe these little things affect the child and they become autistic.”

The outreach effort in the Flushing area, where the bulk of the city’s 90,000 Korean residents live, began with a round of interviews in the community and an adaptation of autism literature for Korean readers. In late April, the local Korean news media were briefed on the project. Then the translated autism materials were spread to 60 pediatricians, preschools and early childhood centers.

In a year or so, researchers will measure whether several early childhood agencies that contract with the city are seeing spikes in requests for help from Koreans grappling with autism. The hope is that whatever is learned about the disparities can be used to assist other ethnic groups and immigrant populations.

Jaewoo played with his sister, Goune, 5.

“We are trying to build a model, for outreach and facilitation, that would support immigrant families, minority families, to access services available from school systems and from cities and states,” said Andy Shih, an official at Autism Speaks who is managing the initiative.

As diagnoses of autism have become more common, some early intervention providers have taken advantage of the growth in public spending, and lax oversight, by billing for services that were not needed or never provided. Dr. Shih acknowledged that some businesses might “exploit parents scared and confused about how to best support their children.”

That is why, he said, Autism Speaks took care in translating and disseminating the literature on autism, and engaged only with providers recommended by the city’s Bureau of Early Intervention. “We want to get it right and make it useful,” Dr. Shih said.

Unscrupulous providers are not the only potential pitfall. Young Seh Bae, 48, who leads a committee of the Korean American Behavioral Health Association and is the mother of a 16-year-old boy with autism, said she worried that a focus on Koreans, in both the South Korea study and the Flushing effort, could exacerbate stereotypes.

“When you look at the different cultures, and compare the disabilities issues, why do you have to just look at Korea?” she said. “Why don’t you look at certain parts of the United States? What about Oregon? Or Oklahoma?”

And though the study in South Korea was “rigorous,” Dr. Winston Chung, an assistant professor of psychiatry at the Geisel School of Medicine at Dartmouth, said it should be viewed carefully because the researchers used tools designed by a Western culture to measure children in an Eastern one. Typical behaviors in a “Confucian society,” where the norms for eye contact, gesturing social reciprocity and expressing oneself are “profoundly different,” and where the skill of nunchi — measuring someone’s mood and desires without speaking — is valued, could be misconstrued as autistic in some cases, he said.

“In Korean culture, harmony is prioritized, and some kids growing up with this social pressure might be better off keeping their heads down and mouths shut, and these tendencies could be mistaken for autistic traits from a Western perspective,” said Dr. Chung, whose parents were born and live in Korea.

Still, community leaders acknowledge that resistance to autism diagnoses “is a continuous problem,” said Assemblyman Ron Kim, a Korean-American who grew up in the Flushing area.

But it is better than a generation ago, he said, when families thought autistic children were possessed, “where they were literally demonized.”

Taking On Autism As A Family, And A Community

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The power of love and social media has propelled family members of 2-year-old Tyler King into a spotlight for which they weren’t quite sure they were ready.

That spotlight is blue, and it shines on autism during Autism Awareness month in April.

Tyler’s 10-year-old brother, Cole Reedy, made a simple video for Facebook telling everyone how much he loved his brother, who had just been diagnosed in January with autism and 10 other disorders commonly associated with autism. Cole also asked people to display blue porch lights being sold by the national Autism SpeaksLight it Up Blue” campaign to support families dealing with autism.

“The outpouring of the community has been above and beyond belief,” said Tyler’s dad, Seth King.

King said the family has received responses from over 15 states, and Cole’s video has been shared by hundreds of people.

Cole says he was just trying to let others know that his little brother is “awesome” just the way he is.

“It’s nice that people know what it’s like and there are other kids with it too,” he said.

Tyler’s mom, Hannah King, who is a first-grade teacher at Villa Grove Elementary, said the family wasn’t quite expecting to “come out” in such a big way, after running the gamut of emotions through Tyler’s testing and diagnosis.

“We’ve learned to embrace the challenge instead of hide from it,” she said. “We’ve all come along way.”

The King family hopes to keep the momentum going Friday in their hometown of Villa Grove by hosting a Blue’s Cruise fundraising event. Families are asked to meet at about 7 p.m. at The Scoop ice cream stand on the south end of Main Street for a car cruise to view and count the dozens of blue porch lights that are displayed at homes and businesses around town.

For extra fun, cruisers can count the number of lights they see along the route, and the official number will be posted back at The Scoop.

The cruise is a free event, but 10 percent of the days’ proceeds at The Scoop will benefit Autism Speaks — plus money from sales of T-shirts and a special “Blue” music CD for the event.

Cassandra Gunter, owner of The Scoop, is helping to organize the activities and also sold blue lights from her shop.

“The Kings have embraced this diagnosis and have shared their talents and leadership qualities to encourage us to unite as a community and support families on their journey with autism,” she said.

The kids in the community will also get involved Friday by visiting The Scoop for special blue ice cream cones throughout the school day. Hannah King has organized field trips for the elementary students as a character building activity to demonstrate ways to support others and the community.

“I think it’s great that the kids are learning about it too, so they know we aren’t all the same and that’s okay,” Gunter said. “It’s definitely heightened awareness in this community.”

To finish out the month, Hannah King is working with a local fitness group, Chix in Training, to sponsor a family-friendly run through town. It will be at dusk and runners will carry glow sticks with them. Details are still being worked out for an evening in late April.

She says the best part of the experience has been connecting with other families with autistic children and sharing feelings and ideas about their experiences.

“We learn from other families and they learn from us, and that’s been the tremendous part of it,” Hannah King said.


If you go

What: Blue’s Cruise autism awareness fundraiser

When: 7 p.m. Friday, April 19

Where: The Scoop in Villa Grove

Cost: Participation is free; donations to Autism Speaks may be made at the Villa Grove State Bank to the Tyler King for Autism Awareness fund (all money will be donated to Autism Speaks)

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

Showing the faces of autism – This Just In – Salem, Massachusetts – Salem Gazette

Bringing Autism Awareness To College

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Nick Lombardi, an incoming freshman class of 2017, will continue his dedication to helping others understand autism here at Manhattanville. Since a young age, Lombardi has worked to spread understanding and knowledge about autism to the larger community.

Growing up Lombardi’s younger brother Joey was diagnosed with non-verbal autism. Since the young age of five years old, Lombardi was always trying to watch out for his younger brother. Autism has often been called the “invisible diagnosis”, people with the condition have no outward appearance, yet are unable to function on a day to day basis. In an effort to end the misunderstanding, Lombardi created a pin stating “I’m not misbehaving I have autism, please be understanding”.

“My thought was if I was able to give Joey a way of letting others know he was doing the best he can, that he had a disability, folks would be more understanding,” said Lombardi. “My pin has done just that. When Joey wears the pin it explains his challenges and like magic, folks are more sensitive to my brother.”

Through the sales, Lombardi has helped to raise over $75,000 for autism awareness and hopes to remove the barriers between those diagnosed with autism and those unacquainted with the condition. The pins are also distributed by Autism Speaks, an autism advocacy program. To honor his continual work Lombardi’s home town of Greenburgh, NY declared January 23, 2013 “Nick Lombardi Day and presented him with a citation of achievement.

“I realized the more folks know about autism, the kinder this world would be for my brother and kids like him,” Lombardi stated. “I gain the pride of knowing I am doing something, even if it’s only one person, to change their view of my brother and others like him. To know that, is the best feeling you could ever have. There is no real word for it.”

Nick Lombardi at zoo

Lombardi believes that beginning Manhattanville in the Fall will provide him with the opportunities and resources to continue his efforts for autism awareness. Having visited the campus before applying to colleges, Lombardi got his first glance at the pride of a service-orientated college. Planning to major in Special Education and anticipating to continue his work with autism awareness, Manhattanville’s continuing dedication to community outreach and service is the perfect match for Lombardi.

“Manhattanville gives me the best of all worlds,” Lombardi said. “It’s a beautiful school, with respected programs in the career I desire, and has its heart and priorities in the right place. Where can I find a better fit?”

Autism-Friendly “Sesame Street Live” Coming To Detroit

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Grover doing the “Michigan is Listening” pose outside of the Fox Theatre.

For most children, attending a special event like “Sesame Street Live” is an outing filled with songs, laughter and, if they’re lucky, a hug from Elmo or Cookie Monster.

Children with autism may be at the same event, but they sometimes see things in an entirely differently way. A sudden change in lighting, the huge amount of sensory stimulation and sudden, loud noises like confetti cannons may cause an adverse reaction, upsetting the child and parent.

That is why this Friday’s 7 p.m. performance of “Elmo Makes Music” is a milestone. The show will be presented as what is being called an Autism Friendly Performance, a first for the Fox Theatre. The goal is to both help families feel comfortable within this environment and to educate staffers, performers and audience members on what makes the theater experience more enjoyable for children with autism spectrum disorders and other sensory difficulties.

“It is impressive that this iconic theater is standing up for autism and has the courage to support this initiative,” said Stefan Kogler, one of the event’s organizers and co-communications chair for Autism Speaks, North America’s largest autism science and advocacy organization.

Kogler also is parent to Brogan, his 12-year-old son with autism. Kogler said it is notable that nothing was changed in this performance of “Sesame Street Live” to make it palatable to these families. Rather, the VEE Corporation, the producers of Sesame Street Live, and Olympia Entertainment worked with Autism Speaks to ensure a pleasant, successful experience for those in attendance.

For example, the theater is providing production notes to parents ahead of time, to prepare their children for what to expect, should anything be a potential trigger. Quiet areas will be set up inside the venue to allow families to take a break for a few minutes and extra spacing will be incorporated in some seating areas to allow for room to move around. Also, gluten-free concession food options will be made available.

These are small changes for sure, Kogler said. But they make a world of different to a family that might otherwise decide staying home is easier than a trip out.

“In many cases, it’s difficult to go out as a family because we’re not sure how Brogan is going to react to the environment,” Kogler explained. “Someone might think he’s acting out. They look at me like I’m a bad parent. I’ve had people ask me why I’m not disciplining him.”

Helping Brogan and others learn to adjust to their surroundings also is an important part of working with them, so having an autism-friendly environment provides a safe zone to do so, Kogler added. And he’s come a long way since his diagnosis at age 4. In fact, Kogler jokes that while his son was largely silent until then, “we cannot keep him quiet” now.

A long-term goal for Austim Speaks is to enlist more venues to join this effort. This is one facet of its “Michigan is Listening” initiative, which began last July. The initiative is a statewide awareness program that asks the people of Michigan to pledge to tell 10 people about autism.

Since then, groups including the Palace of Auburn Hills and all of Michigan’s White Castle restaurants have stepped up to become destinations that have committed to offering welcoming environments to individuals on the spectrum.

“We wanted to partner with locations around the state that are committed to making their environment autism-family friendly. We were really pleased with how Olympia Entertainment and Tom Wilson (President and Chief Executive Officer of Olympia Entertainment) embraced this idea,” Kogler said.

“If everyone in the state just told 10 people about autism, it would be such a help in raising awareness, helping families receive an early diagnosis and give these kids a fighting chance. The more educated we are the better,” Kogler said.

Olympia Entertainment, a Detroit-based company owned by entrepreneurs Michael and Marian Ilitch, is one of the country’s most diverse sport and entertainment companies and the largest organization of its kind in the mid-west. The company owns and operates Detroit’s Fox Theatre, City Theatre and also books and operates Joe Louis Arena and books Comerica Park.

Tickets ($35, $22, $17 and $9) are on sale now. A portion of the proceeds from the sales of select tickets ($9 to $22 range) will be donated to Autism Speaks and can be purchased by calling the Olympia Entertainment, Inc. Group Sales department at 313.471.3099. Tickets are available to all members of the public and purchasers should specify they are interested in the Autism-friendly performance.

Improving Social Interaction–With A Little Help

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In May 2012, I posted an article from entitled “‘Love Hormone’ May Boost Sociability In Kids With Autism“.  Here is a follow-up from Autism Speaks regarding the potential for oxytocin to help kids with autism to overcome some hurdles of social interaction.  Oxytocin, a naturally-occuring hormone, is associated with helping newborn infants to bond to moms, and shows great promise in promoting social interaction.  Fingers and toes are crossed. -Ed


Last August, Laurie and Eric Chern traveled from their home in Chicago to have lunch with a few moms in North Carolina. Longtime supporters of Autism Speaks and the parents of a son with Asperger syndrome, the Cherns had helped fund a study testing whether a nasal spray containing oxytocin, a hormone involved in social bonding, could improve the social and communication skills of children on the autism spectrum. They wanted to meet some of the North Carolina families participating in the research.

One of the moms, Barbara Marotto, of Rougemont, N.C., talked about her son Gabe, now 8. “From the day he was born, Gabe didn’t connect with me in ways that babies typically connect,” Marotto said. “He never looked at me. He never babbled. He hated being swaddled as a baby.” By the time Gabe was 2, it became clear to his mom that the usual “parenting techniques” had little effect on his tantrums and other difficult behaviors. “As he got older, he was very, very active and literally bounced off the walls,” she recalled. Gabe also became extremely aggressive toward his younger brother. When he was 4, he was diagnosed with autism. Two years later, his parents enrolled him in the oxytocin trial at the ASPIRE Research Program of the University of North Carolina School of Medicine, in Chapel Hill. His psychiatrist, Linmarie Sikich, M.D., led the investigation, with the support of the Autism Speaks research grant that the Cherns had funded.

For eight weeks, roughly half the 25 children were randomized to receive the oxytocin nasal spray, while the other half was given an inactive spritz of saline, or salt water. Marotto recalled how she immediately saw evidence that Gabe was receiving the “real deal,” not the placebo. “It was like this little boy came to life. He laughed and smiled a lot more, and he was very expressive,” Marotto recalled. “I also noticed a big difference in the fluidity of his communication. He had always been able to talk, but it’s a struggle for him. With the oxytocin, that difficulty disappeared.”

Though the participants were randomized to receive either oxytocin or a placebo for the first eight weeks, subsequently all participants received the oxytocin spray for another eight weeks. In this way, every child experienced the treatment.

Eric and Laurie Chern

The Cherns were thrilled to hear the mothers describe their children’s positive response. But they were also quietly devastated by what they heard next. The moms described how their children’s social gains slowly evaporated when the clinical trial was over and they were tapered off the oxytocin. One mom described it as “being given a gift and then having it taken away.” After the mothers left the room, Laurie broke down and cried.

The Cherns tried to stay focused on the bigger picture – and the great news Dr. Sikich had shared before they met with the moms. She had informed them that thanks to the positive results of the pilot study they helped fund through Autism Speaks, she had received a $12.6 million grant from the Eunice Kennedy Shriver National Institute of Child Health and Development (NICHD) to conduct a much larger and longer trial on oxytocin in children and teens with autism. This represented a huge step toward possible approval from the Food and Drug Administration (FDA).

“I turned to my husband and said, ‘I think we hit the jackpot,’” Laurie recalls.

Testing oxytocin 

Dr. Sikich says that the grants from Autism Speaks and NICHD have affirmed the many years she has dedicated to improving social and communication disabilities in individuals with autism. “The ability to relate to other people, to communicate with them, is one of the things that make us most human,” she says. But, like many healthcare professionals working with those in the autism community, she had long been frustrated by the lack of medications to treat autism’s core symptoms.

Dr. Sikich, seated second from right, with her team at ASPIRE, a research program for children and adolescents with autism.

When researching potential treatments, she saw great promise in the hormone oxytocin. First, the body produces it naturally. Second, she found strong research on its use in laboratory animals and humans – though relatively little of this applied specifically to autism. For instance, animal studies had clearly shown that oxytocin promotes social behavior and bonding between offspring and their parents. In primates, it increases  awareness of other individuals in the same enclosure. And in several studies in humans, subjects who received even a single dose of oxytocin showed improvements in social judgment and their social interactions. In one small, preliminary study, individuals with autism showed improved responsiveness to others during social games such as ball tossing after just a single dose of oxytocin nasal spray.

“These kinds of findings suggested that maybe we could give oxytocin on an ongoing basis to really improve things on a social perspective,” Dr. Sikich says. She also hoped that improving social interactions could enhance learning – and so increase the benefits of therapist-led interventions, as well as success in school.

“So much of how people learn is based on social interactions,” she explains.

As a practicing psychiatrist, Dr. Sikich also recognized that many parents were administering oxytocin to their children without medical guidance. Often times, the oxytocin supplements they purchased lacked safety testing or even standardized concentrations. At the same time, when these parents came to Dr. Sikich seeking advice, she had little insight to offer. “We had no clear way of looking at how well it works and what its side effects or long term effects might be,” she says.

Gabe getting a routine check-up during the oxytocin study.

In 2010, Dr. Sikich received the Autism Speaks grant the Cherns helped support for a two-year pilot study. Her team enrolled 25 children with ASD between the ages of 3 and 17. The interest was immediate and huge. “This was the fastest we had ever seen a clinical trial attract participants,” she says. In addition to the 25 children accepted into the pilot trial, the team had 100 more on a waiting list. (These children are now eligible to participate in the larger trial, which will enroll 300 children and teens.)

The preliminary results of the study’s first phase found that those who received the oxytocin showed greater improvement in social behaviors compared to those who received the inactive spray.

Based on these early findings, Dr. Sikich applied for the NICHD grant. “We were concerned because we hadn’t yet completed the pilot study,” she says. But the grant deadline was looming. To her surprise, the study reviewers at the NICHD began emailing questions. They wanted more details about her pilot study, a very good sign. NICHD funding would be particularly important, Dr. Sikich knew, because of the limited commercial potential for the treatment. Few pharmaceutical companies are likely to be interested in oxytocin because clinical trials are very expensive, while a natural substance cannot be patented to recoup the investment, she explains.

Autism Speaks’ community of families has become incredibly sophisticated in their understanding of the science behind therapeutic studies like these, says Robert Ring, Ph.D., Autism Speaks vice president for translational research. “As donors, they have become engaged in providing the financial leadership that is being leveraged to ensure greater translational impact. “This is exemplified by the Chern family and further illustrates how our donors are essential partners in the translational process.”

The larger study, slated to start in 2013, is called SOARS-B, for Study of Oxytocin in Autism to improve Reciprocal Social Behaviors. It will take place at five centers across the country. (For specific locations, click here).

During this study’s first six months, half of the participants will receive the oxytocin nasal spray and the other half will receive the placebo. During a second six-month phase, all participants will receive oxytocin. Researchers will measure improvements in social skills and communication. They will also use blood samples to conduct genetic tests to look for evidence that oxytocin alters gene activity in ways previously associated with sociability.

In addition, Dr. Sikich’s group plans to study other treatments. As part of the NICHD grant, she received an Autism Centers of Excellence (ACE) grant that will allow the team to train autism researchers and set up an autism-research network. “The hopes are that this won’t be a group of investigators that just does an oxytocin trial, but that this will be a group of investigators who will research lots of treatments for autism,” Dr. Sikich explains.

“The grant would not be possible without the Cherns and other families that contribute to Autism Speaks,” Dr. Sikich adds. “Their level of caring and concern was really obvious. I was really impressed with how much they wanted to help all people with autism.”

Wanting to connect

Laurie and Dylan, at a Chicago Autism Speaks Walk.

“When someone says ‘thank you’ to me for our volunteer work, I laugh, because I don’t think that people understand what it does for me, that this is my best form of therapy,” says Laurie Chern, a former first-grade teacher. Ever since her own son, Dylan, started showing signs that his behavior was different than other kids, Laurie has wanted to connect with other moms.

“The behaviors I saw in Dylan were not things I had experienced with any of my friends’ children. I didn’t know who to reach out to,” she explains. When Dylan was 2, he banged his head on the floor and the walls. He was fearful of loud noises and couldn’t tolerate many food textures including that of baby food or sandwiches. In preschool, he would roll his head on the carpet during circle time. He had trouble respecting other kids’ personal space.

Dylan with sisters Ari and Jane

Over the next few years, Laurie struggled to figure out why her son was different and how to help him. He received speech therapy for auditory processing delays and occupational therapy for low muscle tone and lack of coordination. At the age of 4, a neurologist screened him for major neurological problems. At 5, he underwent a complete psychological examination. That led to an initial diagnosis of pervasive developmental disorder not otherwise specified (PDD-NOS). At 7, he was re-evaluated and diagnosed with Asperger syndrome.

“Throughout the experience, I had a really hard time, and a lot of that was because I didn’t know anyone who was dealing with what we were,” Laurie says. She looked for support groups online with little luck. She talked with her best friends, but sensed that they didn’t quite understand.

Guests bidding on the silent auction at Eric’s surprise party

In 2010, her husband’s 40th birthday became a turning point. She knew Eric would be uncomfortable being the center of attention for a traditional birthday party. She decided to make it a fundraiser for a cause that would be meaningful to them both. She chose Autism Speaks.

She decided on a gambling theme and silent auction. Laurie canvassed local businesses, asking for donations for the silent auction and at the same time explaining autism and its prevalence. At the party, guests received chips for gambling, and could win gift certificates to local restaurants. If they wanted additional chips, they could write a check to Autism Speaks. Laurie also asked that in lieu of a gift for Eric, they make a donation to the organization. All told, the party raised over $10,000. Standing before the crowd, Laurie read prepared remarks about Eric that included mention of Autism Speaks as a cause near and dear to their hearts. But she stopped short of mentioning their son’s diagnosis. “I was still going through the process of accepting that he had Asperger and wasn’t quite ready to talk about it other than with my close friends,” she recalls.

Laurie making a speech with Eric at the fundraiser

That night launched the Cherns into the world of autism volunteerism. “I found having a fundraiser and what we had done to raise awareness so gratifying,” she says. “I wanted to continue that feeling of reaching out to others.”

She began volunteering with Autism Speaks’ Chicagoland chapter. Along with Liz Klug, Autism Speaks’ Midwest regional director, she created the Community Ambassador Program, which trains volunteers to raise awareness about Autism Speaks’ resources for families among doctors, psychologists, educators and other professionals.

“There were lots of people who wanted to help but didn’t know how to get involved,” Klug says. “Laurie told me that she felt isolated when her son was diagnosed, so she created a way for us to reach out to people. At the same time she created a community.”

The biggest reward for her time and energy, Laurie agrees, was the opportunity to connect with others. “In training volunteers, I was able to share in their personal stories and build on those relationships,” she says.

About a year after Eric’s birthday fundraiser, the Cherns decided they wanted to make a larger donation – specifically one that would further research toward a promising treatment for autism. They reviewed a list of about 30 clinical trials that Autism Speaks had approved for funding. Laurie immediately drew stars next to the oxytocin trial.

“It appealed to me because it was something that could potentially help a huge number of kids no matter where they were on the spectrum,” she says. The Cherns also appreciated that the medication was delivered as nasal spray rather than a pill, which many children with autism, including their son, resist taking. They also liked that the study involved minimal blood work, another stressful experience for many individuals with autism.

As the trial began enrolling participants, the research team sent the Cherns regular updates. They appreciated the feedback. But Laurie, in particular, craved a more direct connection. She wanted to meet the families behind the data. She wanted to see how their kids were doing. “I wanted to make it more personal,” she says. Dr. Sikich welcomed their visit, as did several of the moms in the study.

During that lunch, the conversation naturally turned towards their children. They shared stories about the way their kids would prefer to read a book in the corner while their friends ran around having fun. They talked about their children’s struggles with anxiety and aggressive behavior.

“I asked so many questions, and they told us about their children and the behaviors they had been dealing with,” she says. “We travel a thousand miles and sit down with a family we don’t know and we share the same feelings and stories,” she says. “I really felt connected to these women.”

Laurie continues to stay connected with other parents through the Community Ambassador program, as well as an Autism Speaks support group called Sibshops, for siblings of children with autism. Dylan’s younger twin sisters attend. In addition, Laurie chairs her chapter’s Resource Fair Committee, bringing exhibitors to Chicago Walks. She and Eric also chair the chapter’s Light It Up Blue Committee.

Today, Dylan is doing well in sixth grade, though he still struggles socially. If oxytocin proves effective in addressing social deficits, Laurie and Eric say they would have to think long and hard about whether or not they’d want Dylan to try it. It’s a highly personal decision, Laurie says, but one that she’d like to see backed by reliable, scientific research.