“Come on, David!” “C’mon, c’mon!” “Come on, Dave, yeah!”
With shouts of encouragement and steady applause from his teammates, David Gorczynski crossed the finish line at Orchard Park High School late Tuesday afternoon, long after most of the other runners in one more race that he almost was not allowed to run.
But David Gorczynski is still running, and because of his fight, all young athletes with disabilities in New York will have one less obstacle to overcome in the seasons ahead.
Gorczynski, 20, has autism and loves to run. This summer, his family’s court case against a state education regulation that banned him from competing because of his age attracted wide attention. Hundreds of people – including his Orchard Park teammates and runners from other schools – signed an online petition objecting to the law, and in August, State Supreme Court Justice John L. Michalski issued an injunction that would allow David to run.
“He’s a great addition to the team,” said David Wert, the Orchard Park cross country coach. “To see how much athletics plays into his life is amazing. And the respect – how my boys have stuck up for him – has been great. They are stand-up kids.”
The statute that was going to force Gorczynski off the team actually was written in 2010 to make sure disabled students who were in high school beyond age 18 could still take part in noncontact sports, as long as their participation would not affect the outcome. (In cross country, only the scores of the top finishers are counted. Since Gorczynski always finishes last, his time doesn’t count to anyone but him).
But that regulation included a subsection saying students 19 and older could only get the waiver once.
David already had one waiver last season, when he was 19. He needed another to compete as a 20-year-old. Keeping him on the team was important enough to his family that, with the help of Neighborhood Legal Services, they went to court.
“The important thing about being included in the school is that school is part of the real world,” explained David’s mother, Mary Ellen Gorczynski. “The real world is not a ‘special needs’ place.”
And organized athletic activity helps young people who do have special needs make sense of real-world interactions.
Dr. Michelle Hartley-McAndrew knows all about that. She is medical director of the Children’s Guild Foundation Autism Spectrum Disorder Center at Women & Children’s Hospital and teaches neurology at the University at Buffalo School of Medicine and Biomedical Sciences.
Pointing out that exercise is good for all young people, whether they have a disability or not, she said participation in athletics enhances self-esteem, social skills and happiness.
David is not her patient, but she said athletics would have similar benefits for anyone with autism.
“It’s a good opportunity for them to socialize in a structured way,” she said. “It takes the pressure off. They can feel part of the event without experiencing the anxiety that can come from less-structured social engagements.”
Hartley-McAndrew said young people with autism may have trouble processing the variables in team sports like football or soccer, with players heading in different directions, with a lot of noise and motion. They are more suited to things like swimming or golf. David’s mother called cross country “an individual team sport,” with the added benefit of having no try-outs to pass.
“In sports like these, they don’t have to worry about verbal or nonverbal cues,” Hartley-McAndrew said. “They don’t have to anticipate other people’s movements but still can be part of the team and the shared experience.”
Wert says that, for all his athletes, including Gorczynski, cross country builds character and closeness.
“Everyone runs the same course, whether you’re JV, girls, boys, it’s the same challenge,” he said. “And it’s a very mental sport. Running 3.1 miles, 5K, is something many adults can’t do. Putting one foot in front of the other takes a lot of mind strength. The first mile, you’re maybe running on adrenaline, but the second mile, you realize there are two more miles to go. You have to push yourself through it.”
David doesn’t run alone. Mary Ellen Gorczynski finds places around the course from which to cheer her son on, and he also has a “running buddy,” Terri Swaydis. She was already a runner and working with people with special needs – she has a 21-year-old son who also is disabled – when she started partnering with David three years ago.
Teammates like Drew Filsinger and others will bump fists with David to encourage him before the starting gun, but it is Swaydis’ job to keep him on the course, which can be rambling and looping.
It isn’t known how many other young athletes were affected by the waiver limit and accepted it without protest, but once news of the family’s lawsuit was publicized, help came to make sure it would not keep any others off the field.
While the judge was still considering his ruling, State Sen. Tim Kennedy, D-Buffalo, contacted State Education Commissioner John B. King Jr. and members of the Board of Regents to ask that the waiver limit be removed from the regulation.
Robert M. Bennett, Western New York’s Regents representative, supported Kennedy’s request and at its September meeting the board passed an amendment allowing for additional waivers from the age requirement.
The state Education Department supports the change and is expected to make it permanent in December, after the required public comment period.
Tuesday evening, David Gorczynski crossed the finish line about 47 minutes after he started his race. While cheers rang out around him, a look of pride and satisfaction swept across his face.
When we hear the voice of someone we like, care about, or have a connection to, there are neurochemical process that take place which signals our brain that what we are processing is pleasant and enjoyable, therefore possesses value, and is worthy of further attention. Hence, a reward system. The underlying concept here is that children with autism possess those processes to a lesser degree. I remember days in college when a professor teaching a philosophy course droned on and one; no matter how hard I tried I could not pay more attention, and eventually without the option of physically leaving, my brain shut down and signaled that sleep was the way to go. Is this really what autism is like? ‘Checking out’ of a conversation or situation because that voice doesn’t stimulate enough chemicals to give its intended reward?
If you couple this concept with that which was posed earlier (the use of Oxytocin to improve socialization), it doesn’t seem so preposterous after all. In fact the use of a ‘love drug’ to foster the increase in rewarding neurochemical reactions seems to be the next logical step in this study. The prospect is tantalizing: two relatively unrelated (except for its target populations that is) studies could potentially clinically validate each other. Oxytocin could be used in conjunction with Functional MRI to study the connectivity between language and autism. This would be an elegant use of the most recent scientific studies related to autism.
Gotta love science!! -Ed
Thanks to a weaker connection between the brain’s language and reward centers, the human voice may provide little to no pleasure at all to kids with autism.
In a separate 2010 study, researchers at the University of Utah began to explore the potential of MRI scans to better understand autism.
As they report this week in the Proceedings of the National Academy of Sciences, researchers were able to spot “underconnectivity” using functional MRI, which tracks blood flow to look for brain activity.
Researchers scanned the brains of 20 children (average age: 10) with so-called “high-functioning autism” — normal IQs but trouble hearing emotion in voices — and 19 kids without autism but in the same age and IQ range. Not only did they find that those with autism exhibited weaker connections between the part of the brain that responds to the human voice and two regions associated with reward, but there was also a weaker link between the brain’s voice processors and the amygdala, which involves emotion — including the ability to perceive emotion in others.
“This is an elegant approach to using neuroimaging to better understand [autism],” Andrew Adesman of the Steven and Alexandra Cohen Children’s Medical Center of New York, who is not associated with this study, said in a news release. “The natural next step is to try to replicate these findings in further studies, and to expand the research to include younger kids.”
It’s still unclear which came first — the weaker brain connections or the lack of use of those connections due to some other neurological deficiency. Either way, these weak links suggest not only difficulty processing emotion in others’ voices, but perhaps difficulty getting any pleasure out of voices at all.
“When we speak, we don’t only convey information, we convey emotion and social cues,” Daniel Abrams, who led the study out of Stanford, said in a news release. And of the theories as to why kids with autism may have a harder time reading those cues — one is that the brain has some sort of sound processing deficit, another is that these social cues don’t register with the brain’s reward system in the same way — this new work certainly leds credence to the latter.
Of course, the study is small and the findings preliminary, not to mention very specific; autism is a spectrum disorder that affects a wide range of people differently. These brain connectivity patterns may look very different in kids who appear at different points on the spectrum than the high-functioning ones studied.
Still, it’s hard not to feel a little sympathy for these kids in the study who have a hard time reading social cues. Who’d want to sit around listening to people talk if those voices bring no pleasure?
- The Human Voice May Not Spark Pleasure In Children With Autism (wnyc.org)
- ‘Love Hormone’ May Boost Sociability In Kids With Autism
What a terrific night for Mike! I have been writing recently about Mike’s exploits in his computer workshop class given at Adelphi University by the Nassau County P.A.L. Special Needs Unit. He learned how to send an email, participated in Google chat, learned how to create a PowerPoint presentation, and learned how to use Twitter and Pinterest, among other things. At the end of the course each member of the class had to create a PowerPoint presentation on any subject they chose and present it to the class and their invited guests. He had been really looking forward to giving his presentation.
Of the many things things that stood out about this class, two things that happened last night really made an impression on me. The first is that Mike calmly volunteered to go first. Listening to the class, many if not half the class wanted to go last. One classmate volunteered another to go first; at least to go before she did. Understandably, some displayed anxiety about getting in front of the group; voicing concern about being made fun of, which would never happen, but the social anxiety exists all the same. Normally Mike would fall into this group, but not last night; Mike was really proud of his work and wanted to be the first to show it off.
Mike presented not one, but two PowerPoint presentations: “Michael’s Wild and Cool Animal Presentation” (his favorite wild animals) and the second on “Me and My Dad’s Favorite Desserts”. Needless to say, I was floored; each slide had plenty of pictures and text, and his use of the ‘Vanna White hands’ to show off his slides was priceless. The dessert presentation had its intended effect: I did indeed come away hungry.
The second thing that stood out was Mike fitting into a crowd. While this was a Special Needs group, which by my estimation included teens with Autism Spectrum Disorders, ADHD, Down Syndrome, and Mental Retardation among others, and with the overwhelming majority of these kids were familiar with each other, Mike really fit in. Mike functioned and interacted at comparable levels with his peers. His verbal skills were probably in the mid- to high-range as compared to his classmates, and he followed appropriate social cues on par with them as well. This was capped off at the end of the night when, unprompted and unsolicited, he extended his hand to shake hands with a classmate and said “Nice job”.
As we were walking to the car to head home, Mike asked me if I was proud of him. Of course, I said, and I added that I was especially proud of how he volunteered to go first, and how he shook his classmates hand.
Nice job indeed.
Click this link to view the video from Mashable.com: http://video.mashable.com/services/player/bcpid1265504713001?bckey=AQ~~,AAABBzUwv1E~,xP-xFHVUstiMFlNYfvF4G9yFnNaqCw_9&bctid=2243013875001
Researchers have helped create apps and online platforms to assist children with autism. But one team at Vanderbilt University is introducing something which may have a leg up on capturing kids’ attention: humanoid robots.
Mechanical engineers and autism experts constructed an adaptive system using NAO, a fully-programmable robot. Paired with cameras, sensors and computers, the friendly robot is designed to help children develop basic social learning skills. (Check out the video above for more).
The system structure, called ARIA (Adaptive Robot-Mediated Intervention Architecture), uses the robot to give verbal prompts and gestures to the child to attract their attention. While eye contact is a natural skill for most developing children, those with autism may find it more difficult to maintain with other people and surrounding objects.
The team’s study found that those with an autism spectrum disorder spent significantly more time looking at the humanoid robot than a typically developing child.
Children engage more with NAO compared to its human therapist counterpart because of less intimidation and anxiety
Children engage more with NAO compared to its human therapist counterpart because of less intimidation and anxiety, says Nilanjan Sarkar, a Vanderbilt professor of mechanical engineering.
“Children experience anxiety dealing with people because they think they have to live up to expectations,” Sarkar tells Mashable. “Here, they know the robot doesn’t expect anything and so they’re not intimated by demands, whereas a human therapist may get annoyed or impatient.”
Prompt levels increase with the child’s reaction, and the robot will work with screens around the room to introduce songs and videos to trigger interest. When the participant performs responsively, NAO gives encouragement. If the child doesn’t respond, it provides additional support by combining prompts and gestures.
Socializing robots like Keepon may also help children with autism to communicate and interact, but the ARIA system can serve as a supplement to early therapy.
Oftentimes there are waiting period of weeks or months for treatment, but with further study Sarkar says the robot can serve as an interim learning tool.
“Some children are diagnosed but there’s no immediate therapist available,” he says. “If it proves effective, it can be used at home or along with a therapist so they can monitor multiple children during a session.”
In May 2012, I posted an article from DisabilityScoop.com 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.
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.
This seems like a novel approach to foster/model socialization. Many children on the spectrum already mimic tv shows and movies; this would be a way for them to learn appropriate language with their peers. The self-confidence they gain is an added bonus. -Ed
As the founding artistic director of Gold Coast Theatre Conservatory’s Acting Academy for Autism, Stephanie Wilson said children have less stress learning social skills in an acting class than they do in a traditional social skills class.
“These kids take a script or an improvisation and look each other in the eye and have a real conversation. That is our goal — they understand each other’s emotions,” said Wilson, of Westlake Village.
One exercise, for instance, prompts youths to say a silly word or phrase.
“But each time they change the emotion: happy, sad, scared, hungry,” Wilson said. “They love this game, and it helps them with body language, facial expression and voice tone. Those are the big three.”
On Monday, the conservatory will present its second acting academy for youths in grades three through 12 with high-functioning autism or Asperger’s syndrome. Nearly 40 children with autism attended Gold Coast classes in the past year, Wilson said.
“Parents say that they weren’t sure about our program until they heard their 10-year-old son running around the house reciting Shakespeare,” Wilson said. The program also received a grant from Thousand Oaks and can offer scholarships to some students.
Classes are taught by Wilson and her daughter, Elizabeth Angelini. Angelini was diagnosed with Asperger’s when she was 12 and has been involved in education for almost a decade. Another instructor, Billy Parish, graduated from the London Academy of Music and Dramatic Arts and received a bachelor’s degree in theater from Occidental College.
“When I first enrolled my 10-year-old son, Wyatt, in the program, I was worried that he would not be outgoing enough, too easily distracted and unable to fully understand the materials,” said Nancy Alspaugh-Jackson, of Hidden Hills. “Was I wrong. He is in love with the experience, and just today he was reciting lines from Shakespeare. … We plan to stay in this program as long as it is offered.”
Marilyn Binggeli, of Simi Valley, enrolled her 14-year-old son last year.
“David has grown in confidence since joining. He is very disciplined and focused on doing his best,” she said.
The Centers for Disease Control and Prevention estimates one in 88 children has been diagnosed with autism spectrum disorder, but the data comes from 2008 so numbers could be greater now, Wilson said.
“We still don’t even know what causes autism or why it’s growing, but we do know that it is not simply that we are better at identifying it,” Wilson said.
This year’s offering was prompted by last year’s success, Wilson said.
“I am getting more and more calls from parents with adult children with autism who are interested. … We are trying to figure out how to accommodate them in a separate class from the younger kids so that they, too, can have the experience of becoming self-confident and accomplishing something.”
If you go
What: Gold Coast Theatre Conservatory’s Acting Academy for Autism
When: 4-5:15 p.m. Mondays for grades 3 through 7; 5:30-6:45 p.m. Mondays for grades 8 through 12. All classes run Jan. 14 through March 18; no classes Jan. 21 and Feb. 18.
Where: Four Friends Gallery, 1408 E. Thousand Oaks Blvd., Thousand Oaks
Enrollment: Call 427-5314 or email GoldCoastTheatre@gmail.com.
Experts say special sports and recreation programs help children and adults with autism socially as well as physically.
Andres Zamora dribbled a soccer ball left and then right between two cones. He approached an empty net, and with a Bom Bom Bum lollipop hanging from his mouth, kicked and scored — actions that a year ago would have required his dad’s close assistance.
“Last year, he wasn’t able to do what he’s doing now,” said Mario Zamora, who can now watch from the sideline as his son plays.
At age 7, Andres is honing his fútbol skills at Coral Estates Park in West Miami-Dade, where every Saturday for eight weeks up to three dozen kids and teenagers practice dribbling, passing and scoring. But there’s a larger goal for these kids, all of whom have been diagnosed with an Autism Spectrum Disorder.
Shoot for the Goal, a Miami-Dade Parks and Recreation soccer program, is also about socializing, focusing, exercising outdoors and following instructions, all of which can prove difficult for children with autism.
“This is fantastic,” said Carlos Tellez, whose 8-year-old daughter, Natalie, scampered on a miniature field tapping at a ball with her pink shoes.
When it came time to kick goals, she swung her leg hesitantly at the five balls lined up in front of the goal. On her second go-around, after waiting her turn in line with her mom, Natalie wound up and punted them a little harder into the net.
“They should have more of these,” said Tellez.
More children are being diagnosed with autism, a spectrum of neurological disorders that can affect the way a person communicates, interacts, behaves and learns in ways mild to severe. The Centers for Disease Control and Prevention says one in 88 people is affected.
And with a growing demand for services such as sports and recreation, local government, businesses and philanthropic agencies are doing their best to keep up, but it’s a struggle.
Miami-Dade Parks, which has offered programs for the special needs community since the 1970s, recently began offering classes specifically for children with autism through its Disability Services Programs.
Shoot for the Goal, part of an autism sports program that began three years ago with just 20 kids, is now part of a seven-month-long series. This year, the program, which caters to groups of kids from 6 to 18, also includes basketball, baseball and swimming.
Arlene Bouza-Jou, who runs the program, expects large numbers this year. Last year, she had 40 kids enrolled during the entire program. Just for soccer, she already has 32.
The children and teenagers who attend range in severity of autism. Some are higher functioning, or may be on the cusp of the autism spectrum, and are able to play on their own. Others don’t speak, and may need help or constant coaxing to dribble down the field or continue kicking goals.
“I see kids that are coming who have never done any sports, don’t like to be outside, do not socialize or haven’t learned how to socialize, and they’re learning these skills,” Bouza-Jou said. “These are little things that a child with autism may never do if they’re not exposed to it or taught. In their own way, and if you let them have their pace to learn it, you see it right there.”
Bouza-Jou also runs the TOPSoccer Program at Coral Estates Park, which integrates young children with autism and “typical” kids.
Other organizations are also pitching in with autism-specific sports programs.
D Amor Foundation, a Kendall-based, philanthropic group founded this year by the parent of an autistic child, provides scholarships for soccer, taekwondo and horseback riding. There are also surfing sessions on South Beach held by the UM-NSU CARD, a joint autism outreach and support program through the University of Miami and Nova Southeastern University in Davie.
And the Good Hope Equestrian Center, a not-for-profit organization that has a 20-acre ranch in Southwest Miami-Dade, offers individual and group horseback riding sessions for children and adults with autism. The organization participated in a 2008 study by the University of Miami that found evidence that horseback riding was beneficial to people with autism.
Michael Alessandri, executive director of CARD and a clinical professor of psychology and pediatrics at the University of Miami, said the need for services that are tailored to people with autism is clear. He said CARD has 7,000 clients from Key West to the Broward County line registered in its database, more than 1,100 of which are older than 21.
Alessandri said sports and recreational programs have a number of benefits for kids and adults on the autism spectrum. While there are obvious physical benefits of exercise that apply to anyone, activity becomes more important because people with autism often tend to avoid physical activity.
Alessandri said avoiding exercise can be due to complex sensory issues that might include an aversion to sweat, heat or sunlight, and difficulties with coordination and socializing. He also said anxiety plays a major role, as well as medications that cause patients to gain weight or become tired.
All these issues, require planning and trained personnel, and can make hosting successful sports programs difficult, Alessandri said. And as people with autism grow older, programs become fewer in number.
“We’re kind of in an impossible situation where we have so many kids with so many needs,” he said. “But we don’t have the resources.”
Alessandri said the more programs available, the better, as they bring kids and adults with autism into social situations.
“The one thing that’s a bit of a myth, is people have this idea that because people with autism tend not to be social they don’t desire friendships or social relationships,” Alessandri said. “Those who are higher functioning, they will tell you they’re lonely and sad and want to be included and want to feel special.”
Henry Haitz, who was at Coral Estates Park on a recent Saturday with his 15-year-old stepson Henry Porto, put it this way:
“These guys just have to work way harder to do this.”
Take Jimmy Billardon, a lanky 14-year-old Miami Beach Senior High student who circled the soccer field, kicking a ball with a size-13 shoe.
Billardon loves sports like swimming and enjoys structure, said his mother, Sally. But he doesn’t enjoy speaking so much.
So she found that playing soccer allowed him to be active and social and busy on Saturdays, without having to worry so much about carrying on a conversation.
“This has always helped him,” she said. “He likes sports because it builds his self-confidence. He can speak but he doesn’t like it, so he can do this without all that fancy communication.”
At the end of soccer practice for children 6 to 11, Natalie Tellez, Andres Zamora and another half dozen kids gathered together, put their hands in a pile and shouted “Goooooooo Team!”
Natalie looked up: “I did it!”