Autism Spectrum Disorder
Billy Nacmias weighs in at 168 pounds today (left) since checking into Center for Discovery in the Catskills at 280 pounds (right).
There could be no better Christmas gift than watching your son’s life be saved.
But Jack had been used to having his own home wrecked.
He lived with his autistic teenage son, Billy, who had grown up as a mild-mannered boy lost in the bewildering maze of his affliction.
But as Billy reached full-muscled puberty, he was beaten by a teacher in now-defunct Beach Channel High School. Billy’s reaction was to eat uncontrollably until he hit 280 pounds. His anger grew in scary proportion.
“Some days, Billy would just suddenly go berserk and destroy the whole house,” Nacmias said. “The cops would have to come to restrain him. My wife and I would clean up the mess and weep. Not for ourselves. For him. For Billy. We didn’t know how to help him.”
Jack and his wife, Jane, loved Billy as much as their other kids, James and Danielle. But Billy had reached an age when keeping him at home was counterproductive to everyone’s quality of life — especially his own.
The Nacmiases sued the city.
As part of the settlement, the city offered to let them pick an institution of their choosing to try to rectify the harm done to Billy. The Nacmiases searched for the right place, where experts might rechannel Billy’s rage.
A few days after Thanksgiving, I stopped by the Nacmias and Son Sunoco station on Coney Island Ave. for my six-month tuneup. The usually jaded Jack Nacmias was a bouquet of smiles. I asked for the same high-octane gas he was on.
Billy Nacmias as Scrooge in ‘A Christmas Carol,’ a role which contributed to the discipline that led to his dramatic weight loss.
“I believe in miracles,” he said. “My son Billy has been saved.”
Nacmias started talking as fast as a tobacco auctioneer. Billy had been placed in the Center for Discovery in the Catskills. He said professionals there had transformed his overweight, unhappy, often violent son into a trim, joyful and productive young man.
Jack whipped out remarkable before-and-after photos.
“When we visited him, Billy rushed out and hugged us and proudly showed us the house he shared with four other kids on this 1,000- acre paradise,” Jack said. “There’s a full-time nurse, all kinds of dedicated counselors, and he works with egg production in the henhouse, with horses and sheep. He dropped from 280 pounds to 168 pounds, and he’s the trail leader on team hikes. He’s also studying drama to play Scrooge in ‘A Christmas Carol.’ ”
Jack is a grizzled Brooklyn grease monkey, not prone to sappy displays of emotion. But as he talked about his son, he wiped a damp eye. “On Thanksgiving, we took Billy to my cousin’s house and he ate with perfect table manners, using a knife and fork,” Jack says. “Billy ate responsibly, and when he was done, he asked if he could be excused.”
Billy Nacmias found a passion for the stage — among other things — at the Center for Discovery in the Catskills.
Nacmias said the Center for Discovery is equipped with state-of-the-art technology and programs for autistic kids like Billy.
“The Center for Discovery uses a holistic approach,” says spokesman Loren Riegelhaupt. “All the food the students eat here is organic, farm fresh. They also work. As they lose weight and detoxify from chemical additives, they tend to calm down and sleep much, much better and act out less. They also can focus and learn more. In his 18 months here, Billy has gone through an astounding transformation. We’re thrilled with his success.”
Nacmias is thrilled, too.
“Listen, I use tools, parts, and labor to make a car run,” he says. “But these people have tools and counselors to perform human miracles. They have given my son Billy a life and given my family more happiness than you could ever know.”
The only sad part of the story is that Billy will soon reach the age of 21, when he must transfer out of the center.
“But his progress has been so remarkable that the counselors are trying to see if they can actually hire him to work with new kids like he was when he first arrived,” his dad says. “If they can, he’ll have his place in life.”
On Wednesday, Jack and his family drove up to see Billy in “A Christmas Carol.”
“I’m a Jew,” said Jack. “But here’s my son Billy, who used to wreck the house, memorizing lines and performing in the greatest Christmas story ever written. When I saw him playing Scrooge on stage, I was in tears with pride. It was the greatest gift our family has ever received. Billy has found meaning in life. Now I understand what Tiny Tim means when he says, ‘God bless us, everyone.’ ”
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.”
Westfield teenager Alexandra Jackman recently created a video aimed to encourage teens to understand and accept those with Autism Spectrum Disorder.
During Jackman’s time in the Teddy Roosevelt Scholars independent study program at Roosevelt Intermediate School last year (eight grade) she wrote and directed the video as her class project.
“The purpose of my specific project was to help teenagers be more aware and understanding of people with autism spectrum disorder,” Jackman explained. “The video is so important to me because I feel it could help anyone, especially typically-developing teens, to feel that they can interact and get to know people with autism and not be scared of the differences. People tend to be more accepting when they are more knowledgeable.”
In the video, Jackman asks middle school students and teachers “What is Autism?” many of them who are unsure. She also speaks to the founder of Autism Family Times, parents of children with Autism, an Autism educator and a doctor. She also highlights children of all ages with Autism and even adults who have Autism. Take a look at the full video.
Her video is geared towards teens, but is relatable to all ages on the basics of how to accept and understand those who have Autism Spectrum Disorder.
Since age 10, Jackman has been working with the organization Autism Family Times as a peer mentor for children with Autism. She says the experience is both rewarding and eye-opening.
During the creation of the video, Jackman told Patch, “Maybe if they (middle schoolers) see someone with special needs, they won’t be so afraid to talk with them. For a lot of people, if they don’t understand something, they can be afraid.”
Jackman is now a freshman at Westfield High School, but has said being a part of Autism Family Times has made her consider working in occupation therapy.
“Because of this (experience) I know that I definitely want to do something with special needs when I get older,” she said.
- Autism Spectrum Disorders from A to Z: Assessment, Diagnosis… & More! (theautismprogramuiuc.org)
- Young adults on the autism spectrum face tough prospects for jobs and independent living (sciencedaily.com)
The intervention targets an auditory perceptual deficit that has been noted in many individuals with Autism Spectrum Disorders, and it is believed that the intervention has the potential to improve emotional communication abilities in individuals with ASD.
The intervention takes place at Purchase College, located in Purchase, NY. If you have a child with ASD and are interested in learning more about the intervention, please contact Dr. Meagan Curtis at (914)251-6645 or by email: firstname.lastname@example.org.
I have a great deal of respect for the coaches who understand that team sports like football, should be above everything else, fun. Sports should be about being with friends, doing your best, and after it’s all said and done, leave you with pride and a sense of belonging. Like a family on the Spectrum, sports takes a great deal of effort, gives a sense of family, and leaves you with memories that will last a lifetime. Additionally if done correctly and well, sports helps to develop a person’s personality, perseverance and commitment as they grow older.
Sports, especially football, has been used as a metaphor for life. This is no different for families affected by autism. -Ed
“I like it a lot,” Justin said.
But Justin is different than the rest of his teammates: he has Autism Spectrum Disorder.
“Justin is the sweetest boy,” said his mother Crystal Haacke.
Justin and his family have battled the challenges that come with Autism. Communication and social interaction can be very difficult for him, but the game of football has helped with that.
“Afterwards, when the practice is over, when the game is over you see him get to play with all these kids,” Crystal Haacke said. “And they love Justin so much, and they think Justin is so much fun. And he doesn’t necessarily interact with a lot of people that way.”
Football has also allowed Justin to spend more time with his father, who also happens to be his coach.
“He does his best and goes out there and plays as hard as he can,” said his father Chris Haacke. “Even though he has his limitations he still gives 110 percent on the football field. As a football coach, and a dad, that’s all you can ask for from your son.”
“It’s been a really fun thing for him to be with his dad,” Crystal Haacke said.
As much as playing the game has meant to him and his family, the effects of the disorder have made it too difficult for Justin to continue to play. Due to safety concerns, his parents made the difficult decision that this season would be his last.
Knowing Justin would be playing his last game, his father had an idea; he wanted it to be a moment Justin would never forget.
Mountain View faced Juan Diego on October 20, and Chris Haacke approached the Juan Diego coach and told him about his idea.
“We would like to set up a play for one of our players who has Autism,” Haacke told the coach. “We would like to have him run for a touchdown and let him go out with a bang.”
The Juan Diego coach agreed and ran the play.
“I ran to the end zone and the other coaches said, ‘Hey, Justin, here’s the play. You’re going to get the ball, and you’re going to run to the end zone and run right for your dad,’ ” Chris Haacke remembers.
With a little help from his mother’s cheers, Justin took the handoff, ran to the right and followed his blockers into the end zone.
“Nobody even tackled me because I was too fast,” Justin said.
“Oh wow,” his mother said about watching Justin’s touchdown run. “That moment was great.”
It was a moment his parents and many of those in attendance will never forget.
“The pure joy on his face when he got in there and both teams surrounded him and patted him on the head and were cheering for him. It was overwhelming,” Chris Haacke remembers
“I don’t know if anything else that we could have done for him would have given him that moment,” Crystal Haacke said. “Where he was just the best in that moment that he could have been, that he ever will be.”
The family hopes that moment can inspire others and spread awareness about Autism Spectrum Disorder.
“Autism is hard,” Crystal said. “but there is so many joyful things that come. That experience showed me how many people out there really, really, really just are good and they want a little boy to feel good in that moment.”
“I’m so happy when we win,” Justin said. “That’s my favorite.”
On that day in October, everyone involved was a winner — a moment of sportsmanship at it’s finest. It’s a moment his parents hope he can turn to as he tackles the challenges of autism in the future.
“The funnest part of football?” Justin says, “Win and never give up.”
Jason Frye! The fun-loving eight year old animal enthusiast graces the cover of the second annual “The Many Faces of Autism” 2013 calendar. The calendar, which is now on sale for $10.00 (http://hopeforthree.org/shop43/#calendar) is one of several ways Hope for Three generates funds to assist families who are living with an Autism Spectrum Disorder.
Jason, who resides with his family in Tomball, TX, is one of more than two dozen contestants who vied for the honor of capturing one of 13 positions in the calendar. Our esteemed panel of judges, Clements High School PALS, experienced the excitement of selecting this year’s winners.
Jason, who believes Autism is his super power, is the son of Tonya and John Frye of Tomball and the youngest of his siblings, Bekah, Jesse, Ema and Katie. He was diagnosed with Autism at the age of two. In spite of this, Jason continues to triumph each day.
Jason loves animals, reptiles and insects. His hero is Turtle Man from his favorite channel, Animal Planet. When he grows up, he wants to catch and take care of animals, probably alligators. Mom said, “Jason is smart, determined, and an excellent problem solver. He definitely has an engineer’s brain. He loves to create and build.”
Jason is in the second grade, and his favorite subject is spelling. He loves anything to do with water; skim boarding at the beach, fishing, and swimming. “I’m proud of Jason! He’s having a great year so far,” stated Dad. “This is just a BONUS! Wait til his classmates see that he is a celebrity. Maybe he can have a guest appearance on his favorite wildlife show.”
It’s no wonder little Jason is happy and enthusiastic, his family is right there in the trenches battling Autism; one day at a time with love, encouragement, faith and dedication. “This is one of the reasons the calendar exists”, says Hope Montgomery, Mom to triplets on the Spectrum. “Autism has many faces and people need to see it and understand it. It is broad, complex, emotionally and financially taxing, and can quite frankly rob a child and family if you let it, but with support of organizations like Hope for Three, families sharing their story, information, the medical/biomedical community working together and the understanding from others… one day, we will all be the better for it! At least this is my prayer; I’m claiming it to be.”
Hope for Three, founded in 2011, is a local non-profit dedicated to raising awareness and providing support to families living with the challenges of Autism Spectrum Disorders. The 2013 calendar is on sale now, to purchase, or gift a calendar, visit http://hopeforthree.org/shop43/#calendar. For opportunities on how you can be the difference, upcoming events or Family Resource opportunities, contact Hope for Three at 1-800-317-0787 or www.hopeforthree.org.