More than 48,000 runners took part in the New York City Marathon Sunday morning, and all ran for their own reasons. For identical twins Alex and Jamie Schneider, who are 23 years old and participating in their first New York marathon, running is a way to connect with a world they can’t communicate with otherwise. The twins are severely autistic, and they don’t speak. But when the boys were younger, their parents noticed how much Alex and Jamie loved to run, and now the Schneider family finds more joy in running than in anything else. It’s their chance to bond.
Alex and Jamie, who have run more than 130 races, both run with guides to help them navigate the crowds on race day. Alex runs with his coach, Kevin McDermott, and is hoping to beat his personal best marathon time of 3:23, set in Boston this year. Jamie runs with his dad, Allan. “I’ll explain to people, there’s not a lot I can share with him, but when we’re running, it’s an unspoken language,” Allan Schneider told Good Morning America.
Aiden Lorenzo, 9, right, practices his golf swing with Annmarie Ayers, an occupational therapy grad student from Touro College and volunteer with ISF (Inclusive Sports and Fitness) at Give It Your All Sports in Ronkonkoma. The ISF program is designed to give children with disabilities the opportunity to take part in sports and fitness activities that will help them develop and grow physically, socially and personally.
The Town of Islip has launched a collaboration with an occupational therapist to help kids with autism learn coordination and motor and social skills through golf.
“When you have a kid with a disability, it’s tough to find programs,” said John Lorenzo, of Sayville, whose son, Aiden, 9, is one of 10 children with autism in the program. “You spend a lot of money trying to find activities for them.”
He praised the program for teaching the kids while remaining fun. On a recent day at an indoor sports club in Ronkonkoma, Aiden gripped a colorful golf club and swung at an orange tennis ball, connecting solidly to send the ball flying.
“The kids don’t think it’s therapy. Aiden thinks it’s just sports time,” said Lorenzo, an aide to town Councilman Anthony Senft who learned about the program when therapist Alexander Lopez spoke at a recent town board meeting.
Through Councilman Steve Flotteron, the town has worked with Lopez in the past on a golf program aimed at mentoring troubled teenagers in Brentwood.
The program was so successful that Lopez launched similar programs at universities in Newark and Salt Lake City.
Flotteron noted that these collaborative programs reach out to local youths without costing taxpayer money. “It costs the town nothing,” he said.
Lopez said he started Inclusive Sports and Fitness to help the children improve through the fun and activity of the sport.
“They’re working on their balance, working on their coordination,” Lopez said, adding that golf involves core exercises such as “crossing your midline” and hand-eye coordination.
The 10-week program takes place on town golf facilities and at Give It Your All Sports in Ronkonkoma, which rents Lopez the facility at a discount. The town waives fees for use of the golf courses.
While Lopez and other therapists volunteer their time along with student interns from Stony Brook University and Touro College, Lopez charges a $30 fee for each 90-minute session to pay for facilities and for a yoga teacher, who provides the youths another form of exercise.
Golf is especially useful for teaching body motion to children, said Holbrook Country Club’s golf pro Bill Leposa, who advised Lopez on developing the program.
“It has the instant gratification of seeing the ball move,” Leposa said. “There’s no body type required, either. As long as you can move this way and that way,” he added, demonstrating the classic golf swing.
The golf program, now in its second session, is geared toward high-functioning children with autism who are 6 to 11 years old and left out of mainstream youth sports.
“Sports after a certain grade level gets very complicated, very cliquish,” Lopez said. “These kids, they just need attention. They’re not getting the resources anymore and they become sedentary. This is designed to help them strengthen their bodies.”
Stephanie and Bill MacIntosh, of Farmingville, watched their son, William, 6, playing tug-of-war at the Ronkonkoma facility. “We really wanted him to play sports,” Stephanie MacIntosh said.
William has been diagnosed with autism — specifically the neurodevelopmental disorder Asperger’s syndrome.
“Socially, playing with other kids, he has difficulties,” his mother said. “He’s doing great now. He has healthy outlets.”
She said the program was “priceless.” “It gives him an area where he can be successful,” she said.
Autism is a range of disorders characterized by social and communication problems. Some children will not respond to instructions or even their own names.
That can lead to issues for police. In February, an off-duty officer in New Jersey shot a 21-year-old autistic man after he ran toward the officer’s home and banged on his door. Last year, Chicago-area police fatally shot a 15-year-old autistic boy wielding a knife.
For those reasons, police in recent years have made autism training a priority. About seven years ago, Sgt. Shannon Wichtendahl of the Virginia Beach police joined with the Autism Society of Tidewater to start Respite Nights in her city.
The Chesapeake program started this spring. In both, children pair with volunteers, many of them high school students. But on a September Sunday night, Wichtendahl had police officers and sheriff’s deputies roaming the Bounce House on Lynnhaven Parkway in pajamas for a theme party.
Blake Swenson, a Virginia Beach sheriff’s deputy, said he knew little about autism before he started volunteering two years ago. He said Respite Nights helped show him how to be patient with autistic children.
“I’m a very in-your-face person,” Swenson said. “I needed to learn to take a step back.”
Dressed in pink pajamas, Wichtendahl cheerfully welcomed the 30 bouncers. Many autistic children are high-energy, and some did not relax for the next two hours. They raced from one station to the next, sliding down slides and excitedly exchanging high-fives.
“For kids, it gives them a chance to not be judged,” Wichtendahl said. “For officers, it gives us a chance to deal with kids who are going to be adults.”
Picking at a muffin in a campus cafe, Laura Mackenzie says she and her parents thought she’d go to college, “but pretty much everyone else didn’t.”
Cheerful and matter-of-fact, the 23-year-old recounts troubled years that included difficulty walking and expressing herself, tantrums, inability to interact with people and cringing from physical contact.
She remembers seeing kids playing and not having a clue what to say to them, “although I wanted desperately to join them,” she says.
She was diagnosed with autism at age 7. But she was obviously intelligent.
Armed with her own determination, her parents’ enthusiastic support and some help from special programs in school and college, here she is, earning a bachelor’s in behavioral science at Metropolitan State University in Denver.
“To put things into context, people thought I’d be in a mental institution,” says Mackenzie, who says she processes information and expresses herself relatively slowly but now belongs to two honor societies. “Looking back on it, it’s almost funny.”
For the uninitiated, it’s hard to understand how someone having trouble dealing with everyday life can achieve academically.
But it can happen with autism, and as a rising percentage of children are reported to have the disorder, a growing number of colleges and universities are offering programs to help them with the college experience.
“These are spectacular kids; they think about the world differently,” says Mitch Nagler, director of the Bridges to Adelphi program at Adelphi University in Garden City, N.Y. “We have kids here who got 800s on their SATs, … but they definitely have problems.”
One student at Eastern Michigan University has published three graphic novels but can get lost going from one of his classes to another — even though they’re in adjacent buildings — without practicing how to get there.
“Without question, he will always be under the care of someone,” says Dr. Patricia Lemerand, clinical director of the Autism Collaborative Center at EMU.
Getting extra help
Students with autism must do the assignments and take the tests, just like anybody else. But higher ed institutions are required by law to offer some academic accommodations, including note-taking services, longer times to take tests and separate locations for taking exams.
Some colleges go much further, depending on the needs of the individual. Their services can include frequent meetings with students, accompanying them or doing whatever else it takes to ensure they know how to get to class, plan ahead on assignments and tests, feel at ease socially and even eat and shower regularly. Staff members and peer mentors will also intervene with professors on a student’s behalf about what the student needs. Some students get their own bedrooms, because dealing with roommates can be too stressful.
The extra services can come at a cost. At Adelphi, for example, parents pay $2,620 per semester — on top of tuition — for what Nagel says is one of the most comprehensive programs in the country.
Fees for EMU’s program, which can be very intensive, range from $4,500 to $7,500 a semester. Others are less expensive, including Colorado State University’s, which costs $1,500 a semester.
Some parents and kids shop around for programs with the best fit, meeting with program administrators before applying to schools.
Just getting the kids to the college level can require a tremendous investment of time, money and effort, and with those extra fees, poor and minority kids can be left behind, program directors say. High schools in poor neighborhoods may have fewer services, leaving students unprepared to go to college.
The percentage of reported cases of Autism Spectrum Disorder (ASD) among children has climbed dramatically, with cases reported in all races and ethnic groups. It’s more prevalent among males than females. The overall percentage rose from 1.16 percent of children aged 6 to 17 in 2007 to 2 percent in 2011-2012, according to the Centers for Disease Control and Prevention. Most of the increase stemmed from boys and adolescents, aged 14-17. The rise is attributed mainly to better detection and reporting.
At least two dozen colleges and universities in the U.S. have special programs to help students with autism, and the number of programs is “growing every month,” says Dr. Jane Thierfeld Brown, a longtime disabilities expert who teaches colleges how to help autistic students. Programs are often a collaboration of several departments, such as psychology, social work and education, with graduate students serving as peer mentors.
Developing social skills
ASD includes a host of neurological conditions, with varying degrees of difficulties with language and communication, and rigid patterns of thought and behavior.
Students with ASD, which includes Asperger’s syndrome, can be poor at planning ahead, getting organized, standing up for themselves, reading body language, knowing how they come across to people and thinking other than in a linear, literal way. They may be brutally honest in their conversation and come off as aloof, arrogant, odd or clueless about what’s going on.
But they can be trained to be more aware, diplomatic and assertive in an effective way — skills needed for college, “the most social place you can think of,” says Brown, author of The Parent’s Guide To College For Students On The Autism Spectrum, published in 2012.
Students are together for meals, classes and in dorms, and are often racing to classes along with hordes of other students. “Even when they eat, sleep, wash, it can be overwhelmingly people-oriented,” Brown says.
People with autism can also be overwhelmed by stimuli such as bright lights, strong smells and loud sounds, all of which can be part of the college setting.
At the University of Arkansas, one student doesn’t want to attend football games because they’re too loud. But many students outgrow such issues by college, according to Dr. Aleza Greene, director of the school’s Autism Support Program.
Still, students with autism have different traits and must be evaluated very carefully before a plan of action is drafted. “Our saying is, ‘If you’ve seen one, you’ve seen one,’” Nagler quips.
Some students may not divulge that they’re autistic and thrive without help. Others need a broad range of services, but the goal is to teach them, through repetition and practice, what might be second nature to other students.
Some students think they don’t need help, but their grades say otherwise. “I tell them, ‘You may want to rethink your approach,’” says Greg Root, assistant director of Metro State’s Access Center for Disability Accommodations and Adaptive Technology.
The first year, as with many students, is the toughest, requiring a sudden, drastic change in degree of independence and academic structure.
Many students with autism take less than a full course load each semester and graduate in more than four years. Students delve into a variety of subjects. Nagler’s students have majored in math, physics, communication, accounting, history, biology, business, economics, art, sports management and other fields.To prepare for the world post-college, students can get career counseling and help preparing for job interviews. Some employers seek out individuals with ASD, says Julia Kothe, director of CSU’s Opportunities for Postsecondary Success Program.
Kothe and others with autism programs marvel at how attitudes have changed. Nagler recalls people’s reactions when he did a year-long study in the New York area in 2006 on whether such services were needed in colleges.
“Some said, ‘We don’t want those people here,’” remembers Nagler.
Mackenzie says she likes talking about autism. “I want to spread information about it,” she says. “I want the whole world to know.”
Also performing will be Pop Rock artist Rick Springfield, who won a Grammy Award for his No. 1 hit “Jessie’s Girl” in 1981. Singer-songwriter Ryan Bingham and The White Bufflao are slated to perform. Also taking the stage will be season 10 American Idol finalist James Durbin, for whom the Autism Speaks cause is near and dear to his heart—as he has openly shared his challenges of living with Asperger’s and Tourette’s.
The Autism Speaks Blue Jean Ball is dedicated to raising awareness and funds for innovative autism research and resources for individuals and families affected by the disorder. Tickets, sponsorship opportunities and additional information are available at events.autismspeaks.org/bluejeanball.
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. To learn more about Autism Speaks, please visit www.AutismSpeaks.org.
‘Why’s he doing that?’ Freddie’s father sounded more than usually puzzled by the antics of his son.
After months of displacement activity, Freddie, 11 years old and on the autism spectrum, was finally sitting next to me at the piano, and looked as though this time he really were about to play. A final fidget and then his right hand moved towards the keys. With infinite care, he placed his thumb on middle C as he had watched me do before — but without pressing it down. Silently, he moved to the next note (D), which he feathered in a similar way, using his index finger, then with the same precision he touched E, F and G, before coming back down the soundless scale to an inaudible C.
I couldn’t help smiling.
‘Fred, we need to hear the notes!’
My comment was rewarded with a deep stare, right into my eyes. Through them almost. It was always hard to know what Freddie was thinking, but on this occasion he did seem to understand and was willing to respond to my request, since his thumb went back to C. Again, it remained unpressed, but this time he sang the note (perfectly in tune), and then the next one, and the next, until the five-finger exercise was complete.
In most children (assuming that they had the necessary musical skills), such behavior would probably be regarded as an idiosyncratic attempt at humor or even mild naughtiness. But Freddie was being absolutely serious and was pleased, I think, to achieve what he’d been asked to do, for he had indeed enabled me to hear the notes!
He stared at me again, evidently expecting something more, and without thinking I leant forward.
‘Now on this one, Fred’, I said, touching C sharp (the black note next to C).
Freddie gave the tiniest blink and a twitch of his head, and I imagined him, in a fraction of a second, making the necessary kinesthetic calculations. Without hesitation or error, he produced the five-finger exercise again, this time using a mixture of black and white notes. Each pressed silently. All sung flawlessly.
And then, spontaneously, he was off up the keyboard, beginning the same pentatonic pattern on each of the twelve available keys. At my prompting, Freddie re-ran the sequence with his left hand — his unbroken voice hoarsely whispering the low notes.
So logical. Why bother to play the notes if you know what they sound like already?
So apparently simple a task, and yet … such a difficult feat to accomplish: the whole contradiction of autism crystallized in a few moments of music making.
As I later said to Freddie’s father, if I had to teach a ‘neurotypical’ child to do what his son had so effortlessly achieved, it would take years of effort and hundreds of hours of practice to get to grips with the asymmetries of the Western tonal system and their relationship to the quirky layout of piano keyboard. Yet Freddie had done it unthinkingly, just by observing me play, hearing the streams of notes flowing by, extracting the underlying rules of Western musical syntax, and using these to create patterns of sounds afresh. I had never played the full sequence of scales that Freddie produced. He had worked out the necessary deep structures intuitively, merely through exposure to the language of music. Viva Chomsky!
So how did this child — by all accounts with a severe learning disability — do it?
The phenomenon is explored in the TEDTalk “In the Key of Genius” that I gave with Derek Paravicini, with whom I have been working for the last 30 years. Derek, now 34, like Freddie, has severe autism and has learning difficulties. Unlike Freddie, though, he is also blind — so his perceptual and cognitive capabilities, that permit him to make sense of the world, are even more constrained. In fact, Derek’s capacity to reason and to use language is in the bottom 0.05 percent of the population. Yet his capacity to process musical sound is in the top 99.99 percent: actually, the best I’ve ever encountered, even among advanced performers. He enjoys an international reputation as a pianist — a unique creative talent bolstered by a formidable technique, acquired through many thousands of hours of practice.
How can this be?
In the TEDTalk, I argue that the two things are related. It was Derek’s inability to process language in his early years, coupled with his inability to ascribe functional meaning to everyday sounds, that, I contend, led to his heightened ability to process all sounds in a musical way. One traded off the other. In fact, without the former, it is almost certain that the latter would never have developed. Derek’s disabilities and abilities, like Freddie’s are, I believe, different sides of the same coin.
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