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.
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.”
- DOE, UMaine launch autism resource, research institute (mainedoenews.net)
- Students with disabilities finding new college options (foxnews.com)
- Autistic Students Find Support At Marshall University (beyondautismawareness.wordpress.com)
- Autism, learning disabilities services grow on college campuses (csmonitor.com)
HUNTINGTON, W.Va. — For Laura Beth Galloway, the Autism Training Center at Marshall University was not just a place where her autistic son could have a chance to succeed, but a haven from the misunderstanding and bullying he endured throughout his school years.
Her son Joseph, 17 and 6 feet 5, has a high IQ and a fascination with aeronautical engineering.
He is also someone who was so anxious about shopping for a suit for the prom that he paced around the family car for 20 minutes to get up the courage to go into the mall. And he is a young man who finished his high school coursework at Marshall after he was beat up at his Ohio high school.
Marshall University Program aids students with Asperger’s
The College Program for Students with Asperger’s Syndrome was developed in 2002 by the West Virginia Autism Training Center at Marshall University. (Video by Julia Rendleman; 10/9/2013) CLICK THE PICTURE ABOVE TO VIEW THE ASSOCIATED VIDEO
The assault says a lot about the social difficulties of autistic students and the ways in which they unwittingly play a role in their own rejection. As Marshall training center interim director Marc Ellison recalled it, Joseph was walking through the school cafeteria when he stepped on a condiment packet. He picked it up, and looking for a way to wipe the gooey liquid off his hand, he spotted a jacket over a chair nearby, and used that, not recognizing how inappropriate that behavior was.
The jacket belonged to a school athlete, who naturally took offense, and proceeded to punch Joseph.
Mrs. Galloway, a registered nurse who works in Huntington, W.Va., where Marshall is located, said the Autism Training Center program not only allowed Joseph to escape those kind of incidents, but will now give him an opportunity to get a college degree and a possible gateway to work.
“I feel like God put us here,” she said in an interview in June. “You have to surround your child with people who see his value and see his strengths and weaknesses. He’s always going to have to have a go-to person who will understand his disability, but I really feel like the sky’s the limit for Joseph if he has the right employer and the right supports.”
Marshall’s program is the oldest in the nation to award college degrees to higher functioning students with autism, and it has only been around since 2002.
It was started with a donation of $50,000 from Alexandria, Va., businessman Larry Austin, whose son Lowell became the first student and now works at the training center.
“Marshall’s program is unheralded,” the elder Mr. Austin said. “I think it’s one of the great unsung stories in America.”
The program rests on three principles: the 45 students each have graduate student mentors who make sure they get their class work done and help them learn how to navigate the social world of college; each student lives independently in a dorm; and each student takes the same classes as non-autistic students.
That’s not to say that the autistic students don’t need plenty of help.
If they don’t show up for class, their mentors knock on their doors. If they ask too many questions during a lecture, they may be given a limit of only asking one question per session. And if they become anxious over not knowing what a future reading assignment will be, the program will ask professors to provide a more detailed syllabus.
The university covers the tuition of the graduate student mentors and provides them with a stipend.
“We have learned that the best way for our autism students to transition into adult life is to shadow someone who has been through the undergrad experience,” said Rebecca Hansen, coordinator of the center’s college program. “The mentors can serve as role models, and it’s really wild how much happens during a five-minute social interaction, and you’ll then see the [autistic] student mirroring the same type of behavior.”
While the autistic students are mainstreamed, they hardly make an overwhelming impact at the state school, which has 14,000 students.
Steven Hensley, the Marshall dean of students, said the school has a long history of serving students with disabilities, starting with physical impairments, because it sits on flat land near the Ohio River, a rare geographical feature in the mountainous state. That makes it easier for those students to move around the campus.
Ever since then, he said, “we now feel it is our obligation to serve students with disabilities. The unemployment rate is so dismal for people who are severely disabled that if we can get people who can be productive out in society, it’s the right thing to do at so many levels.”
The training center is proud of having the same student retention rate as the rest of the campus, but while its students are often successful in getting their degrees, finding meaningful employment is a steeper challenge.
John McGonigle, a University of Pittsburgh psychiatry professor who works with autistic adults, said it’s a national problem.
“Even for high functioning folks with autism spectrum disorder,” he said, “80 to 90 percent are unemployed or underemployed, and even the college graduates are often at home with their parents. They struggle, regardless of their level of ability.”
Despite that, the Marshall program has drawn enthusiastic support from parents who have seen their children falter at other campuses.
One of those parents is Scott Badesch, president of the Autism Society of America, whose son Evan is starting his junior year at Marshall.
Evan is 26, and tried two other colleges before enrolling at Marshall.
His family was in Florida when he graduated from high school. He first tried a small private college near his home, but “even though the school did everything in their power to make him successful, he just couldn’t fit in,” his father said.
Next came a community college in Orlando, but it also didn’t work well. “He gave up on education,” Mr. Badesch said, “and we did too because we felt that what he needed to get support wasn’t there.”
The Marshall program has been a much better experience, Evan said. Not only does he rely on his mentor, but such tools as the pictorial schedule he and other students get to help them plan their days, and the chance to socialize with other students like him, have made a critical difference.
Evan’s most noticeable behavior is that he pauses for several seconds before answering questions.
“I think about what that person is asking me for a minute or so before answering,” he said, “because I’m not sure my response is the one the person is looking for.”
That struggle to know what people want and how to gauge their intentions is a constant effort for people with autism.
Joseph Galloway treated it almost like a math problem, his mother said.
Growing up, she said, “he struggled greatly with social situations. He would go to school and come home and just be devastated, because I think people believed his behavior was a choice, and he was choosing to be obnoxious or inappropriate.”
Now that he is older, she said, “he can learn, ‘This is what I need to do’ — but it’s robotic and he goes into every social situation thinking ‘This is what I might face and this is how I should react to it,’ and yet he cannot read people’s expressions.”
The Marshall program works hard to overcome those social deficits. It also supports itself primarily with fees, so that the state money that flows to the center can be used for its outreach program to families with autism who live throughout West Virginia.
For every 100 students who apply for admission, the school may interview 30 and admit 10-12 each year. The students have high-functioning forms of autism, but are not necessarily the most gifted high school graduates, who can often get into other colleges without needing special social supports, said Mr. Ellison, the center interim director.
Mr. Austin, the program’s founder, said Marshall can often help transform students’ behaviors.
“One of the things that was so frustrating about autism when I first encountered it is that wherever your child fell on the scale, the thinking was they would permanently be at that spot. When my son was first diagnosed he was profoundly autistic; now I think his autism is virtually undetectable.
“In some skill areas, it’s like they have superpowers,” he said. “For me, autism is not a problem that needs to be fixed, but a matter of taking advantage of their strengths.”
- Music Therapy & Autism Spectrum Disorder (pdresources.org)
- Pediatric Associates of Jacksonville Announces New Integrative Medicine Services for Children with Autism Spectrum Disorders (prweb.com)
Some autistic quirks and characteristics, are harder to pin down than others. What is true for one person, is not for the next.
The autistic relationship with time and schedules is one of those characteristics. As with many things, it can be something obsessed about, or completely overlooked as unimportant.
Time can mean scheduling. This is important if you have a child that lives by the clock.
A time delay or change of plans can be the trigger for a major meltdown.
Other people with autism can get so involved inspecial interests that they completely lose track of time. They may forget to eat or be up well past midnight working on a project.
For some autistics, time, itself, becomes an obsession. They may actually wait outside of an event, for several minutes, to arrive exactly on time.
For social events in general, some autistic people like to arrive early, when few people are present to gradually acclimate to the environment. Others like to arrive late and disappear anonymously into the crowd.
It seems that each autistic person has their own relationship with time. Like all relationships, it has its challenges.
It can be an abusive slave-driver, or a friendly co-worker.
In the case of the late-night meal skipper, it can be neglected and ignored until it is too late.
Autistic time is flexible, and sometimes, non-existent.
Perhaps this is why so many on the spectrum are fans of the “Dr. Who” television series.
He has special interests, a handy way to escape an unpleasant environment, and a unique and creative experience of time.
He’s probably an Aspie.
- Diving in autism (nonexclusion.wordpress.com)
- Finding the Positives – Women with Asperger’s Syndrome at peace with being different – An Interview with the Indomitable Rose Guedes and Iris Gray -Written by Richard Watts (seventhvoice.wordpress.com)
- How Not to Write A News Article About Autism: Point-by-Point (squidalicious.com)
WORKING TO COMBAT THE STIGMA OF AUTISM by Al Baker, via NYTimes.com
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 book“Unstrange 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.
“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.”
- Autistic child’s breakthrough gains worldwide fame (kvue.com)
- David Mitchell: learning to live with my son’s autism (guardian.co.uk)
C.J. Jackson, 10, of Milwaukee smiles after completing an exercise as part of the Islands of Brilliance program at Discovery World in Milwaukee.
Program gives children career skills in multimedia, print.
Enter C.J Jackson’s world and you’ll find a lot of Mario Kart. The 10-year-old has been fixated on the go-kart style racing video game for years.
For Gabe Hailer, 10, it’s elevators. Sometimes when he worked on his graphic illustration of elevator levels at Discovery World this spring, he took breaks from class to go ride one for a while, up and down, up and down.
C.J. and Gabe are part of an increasing number of children diagnosed with autism spectrum disorders, a group of neural development disorders characterized by repetitive behaviors and difficulty communicating and interacting socially.
Some parents struggle to imagine a future where their child with autism disorders will be able to function independently and pursue a career. And at present, there’s a dearth of programming that caters specifically to their children’s needs.
With intelligences in splinter areas, children on the spectrum can feel out-of-place in programs for kids with significant physical or cognitive disabilities. But their social challenges make it equally difficult to thrive in programs for traditionally developing youth.
The experimental Sunday morning academy for children with autism spectrum disorders such as Asperger’s syndrome fosters creativity through technology while teaching basic skills in programs such as Illustrator or Photoshop. Each child with autism is paired with a professional mentor from Milwaukee’s creative community, who volunteer their time for a few hours on five Sundays to help work with the child on a project.
A key feature of the program: having each child’s illustration, design, comic or animation focus on one of his interest areas.
“This is teaching skills that are marketable,” said Mandy Chasteen, Gabe Hailer’s mom. “Gabe struggles in art class in school because there are so many variables. Here he knows exactly what to do, and he can control it better.”
The Sunday lab academy was conceived by Mark Fairbanks, the co-founder and chief aesthetic officer of Translator, a brand design agency in the Third Ward that hosts open-house style idea-share labs on Tuesday and Thursday mornings. Fairbanks and the Translator team partnered with Discovery World for lab space. They developed a curriculum for two tracks for participants to explore: multimedia or print.
Fairbanks’ wife, Margaret Fairbanks, is a special education teacher who helped design the curriculum. They engaged volunteer paraprofessional educators to help the student-mentor teams. Professional mentors came from their connections in the design industry.
“The way the creative community gives back is that they do pro bono ads to win awards,” Mark Fairbanks said. “We see this as a much better way to be creatively involved in a cause that actually connects with children, regardless of whether they go on to be a designer or developer. They get to engage with not only like peers, but also a mentor who might be able to unlock an area of potential.”
Islands started small with a handful of students and mentors in the first class in fall 2012. The spring’s session that just finished included 11 students between the ages of 9 and 14, paired with 11 mentors.
At the end of the five weeks, the students and their mentors present their work during a share session.
The program is free so far. The Translator team and Discovery World would like to see it grow, but they’re intent on keeping it highly personalized for each child and mentor.
Few models exist for how to design meaningful programming for children on the spectrum. Given their social difficulties, it can be hard to engage the children in an activity adults prefer them to work on, rather than on one the child prefers.
Tim Kabara, center director for the Maplegrove Treatment Center, a West Allis company that creates year-round and summer programming for kids and adults with autism spectrum disorders,said independent programming has not kept pace with the number of new diagnoses.
“We started nine years ago and we found the benefits of the groups being homogenous,” Kabara said. “They feel more comfortable, and they’re more likely to have similar interests. We found that’s a huge step toward getting them to let their hair down and be willing to engage in an activity.”
Islands of Brilliance has personal roots. The Fairbankses have a 14-year-old son, Harry, who was diagnosed with autism spectrum disorder at age 3.
One day, Harry peered over his father’s shoulder while Mark was working in Illustrator.
Mark showed him a few basic concepts, then left Harry to play around in the program. Thirty minutes later, he said, his son had drawn Thomas the Tank Engine — a cartoon the boy loved — using the program’s more sophisticated features.
“He had figured out how to use the pen tool and apply colors and gradients, things I had not shown him,” Mark Fairbanks said during a presentation about Islands of Brilliance. “In a digital age, he can contribute content and make connections for the rest of his life.”
During the most recent Islands session, Harry worked with Justin Hutter, a web designer, to develop a comic series and website.
The spring Islands session wrapped up May 19, and the nature and range of the children’s disabilities makes for a nontraditional share session.
One student presented his poster by holding the illustration directly in front of his face as he spoke, muffling his voice and obscuring his head.
Another jumped up from the audience and started pointing things out on the other child’s work.
When it was C.J. Jackson’s turn, he was so excited to show off the Mario Kart storyboard he created with mentor Simmi Urbanek that he read each and every word on the board, tracing his pointer finger over the letters as he went.
Instead of applause, which unsettles some children on the spectrum, audience members slapped their thighs in encouragement.
Kimlon Jackson, said her son was still nonverbal six months ago. When he was 3 1/2, she said, he only knew five words.
“The program combines CJ’s passion for design in an environment that understands his social challenges, and in a way that could lead to gainful employment in the future,” Kimlon Jackson said. “It’s like a breath of fresh air.”