NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.
While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.
The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif.According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.
Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.
Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.
Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.
Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”
Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”
That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.
Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.
Under federal criteria, which most states follow, the Amber Alert system can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”
Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”
If consideration had become action, perhaps Avonte would be home safe right now. There is still a lack of awareness in schools. Simply to provide better teacher training on wandering would help prevent future disappearances.
So where is the federal autism program on wandering prevention? Yes, budgets are tight, but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.
Now 13, my son wears a tracking device, and is learning ways to keep himself safe. In his room are miniature replicas of his favorite exit signs, and a laptop, which he uses to draw them whenever he likes. He hasn’t attempted to reach the highway since getting the laptop. He’s also at middle school now, cared for by an amazing staff. While Connor still has phobias that can make bolting behaviors difficult to prevent, we finally have the resources to help keep him safe.
But not nearly enough is being done to keep children like Avonte from disappearing. Too many parents are still going through the anguish of losing their wandering children.
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.”
In a speech that Ranieri told Northpoint Patch he worked on for three hours, the teen spoke to the board about his experience with autism and said that his IEP was not being followed. Ranieri indicated that he was inappropriately disciplined and suspended because of his disability.
But just minutes into Ranieri’s speech, the teen was cut off by board president Stephen Waldenburg who said that disciplinary matters could not be discussed at the public meeting.
“This entire discussion which involves disciplinary action is totally improper for a public session,” Waldenburg said.
Ranieri’s parents objected saying that their son just wanted to be heard, but to no avail. Officials at the meeting told the family that their concerns should be taken up with the district’s superintendent, Marylou McDermott.
Video of the interaction is now going viral, with more than 46,000 views on YouTube since it was posted Tuesday.
Nonetheless, Waldenburg is sticking by his handling of the incident, telling Patch in a statement that “we recognize the sensitivities of this issue, but stand firm in ensuring that we are in full compliance with all state and federal laws, as our oath of office requires.”
‘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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Educating autistic children can seem like a challenge. Indeed, it is often hard enough to educate children without ASD, but to engage and maintain the attention of a child with autism when trying to teach them about something in which they have no interest can seem, at times, nigh on impossible. Kids with ASD may require very specialized teaching methods in order to combat sensory issues, difficulties in focusing on things which have no real interest for them, communication problems, and possibly attention deficiency. These problems may lead many to believe that the child is stupid or unskilled, and a lack of socially interactive skills on the part of the autistic child does nothing to help this illusion. The perception is that children who cannot get along with school cannot get along in the real world. As everyone who has witnessed the wonderful work of The Art of Autism know, this perception is entirely unfair. Autistic children are not unskilled – it is merely that their skills manifest in different ways to those of other children, and they are often not easily induced to demonstrate them. This can be frustrating for parents who want to ensure that their child gets the best possible education and best possible start in life. However, a little patience, understanding, and creativity when it comes to education can work wonders. The use of art as a teaching tool can have unparalleled effects in opening up an avenue of communication between student and teacher, and in engaging the interest of the pupil.
Physical and emotional benefits
Art lessons have benefits both practical and emotional. Some young autistic children may struggle with their fine motor skills, for which the simple act of guiding crayons over paper can render a huge improvement. However, as well as honing their motor skills, making drawings allows autistic children to communicate thoughts and feelings they may otherwise struggle to express. Viewing a child’s drawing opens a window into interests, preoccupations and emotions which may go unregarded in a child with ASD, who does not communicate these things in a conventional manner. This can provide the teacher with a greater understanding of the child, which is of enormous benefit when it comes to teaching them.
Painting is a fun activity for Molly
Adaptation and control
Many autistic children struggle in conventional classrooms because the methods utilized do not suit their own particular way of doing things. The idea of adapting their personal methods can be upsetting. Art gives them a degree of control over their learning experience which many greatly appreciate. A child shown a map and told the names of the countries on it may become bored or frustrated, let their attention wander, or simply refuse to participate in the lesson. A child asked to draw their own map, and make it as accurate as possible, immediately has much more control over their learning experience. They are more likely to become engaged in the task, actively seeking out the information they need on their own terms. Crucially, they are able to conduct themselves in a manner which they prefer while at the same time taking in essential information. Furthermore, the tangible end of a drawing assignment provides a sense of focus which may be lacking in other lesson formats – the ultimate end of gaining knowledge being nebulous and non-immediate.
Visual aids are often very useful for those teaching austistic children. Those who provide resources for the teaching of autistic children recommend the use of visual aids to help clarify concepts which may be confusing for someone with ASD. Autistic children are less likely than other children to meekly accept the word of their teacher when the reasoning behind an action or concept seems incomprehensible. Visual aids help to illustrate these concepts, making them seem instantly much more reasonable. This principle can be carried through into the classroom as well. TEACCH – a specialized system of teaching autistic pupils – recommend the use of a highly visually defined teaching area to help children get into a ‘learning’ mindset, and to make it perfectly clear that one cannot act in this space as one would act at home. Many autistic children appreciate clear boundaries and definitions, and there is no more effective way of defining a boundary than through clear visual markers.
People with ASD can respond in surprising ways to creative teaching methods. Music, in particular, has been found to elicit amazing responses from children with ASD. Many autistic children respond far more enthusiastically to a lesson framed musically or rhythmically than they would to a more conventional lesson. Some ASD children like the patterns and rhythms of music or chants, and these can benefit from, for example, math lessons phrased in rhyme, or chanted. Others like the opportunity music gives for them to engage with others through clearly defined parameters. Making music or singing a song with the rest of the class gives the autistic child a part to play which is predictable and easy to complete yet simultaneously creative, expressive, and inclusive. Making them feel included is one of the greatest ways a teacher can ensure that the mind of an autistic pupil is ‘in the moment’, so to speak, that their attention is on the lesson and, crucially, that they are enjoying the lesson. See the Art of Autism story on the importance of music by Jacqui Callis.
Molly drumming at Hidden Wings
Learning through personal expression
Creative methods of teaching can thus provide an unparalleled way of communicating and engaging with autistic pupils. Framing lessons which may otherwise seem dull or pointless within a creative context lends a sense of focus to a lesson, and gives the child a measure of control over their learning experience which helps to ease frustrations and make their education more enjoyable. This will allow them to develop their skills, and to demonstrate to their peers that, although they may not engage with lessons in quite the same way as others, they are in no way intellectually deficient!
“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.
Program coordinator Rebecca Hansen and junior Evan Badesch, 26, go on a bowling outing for the College Program for Students with Autism Spectrum Disorder at Marshall University. Evan tried two other colleges before finding success at Marshall.
By Mark Roth / Pittsburgh Post-Gazette
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.”