From the outside, Colton Young looks like a regular, healthy, 12-year-old boy. It would be impossible to tell just by looking at him that a decade ago he was diagnosed with autism. Ask Colton what autism is and he will tell you it means he works and learns differently.Autism is defined by the Autism Society of America as "a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills."
Colton is currently in sixth grade with his peers at Octorara Middle School and loves going to school. He even made the honor roll this past semester. The curriculum is not modified at all for Colton. In some instances the amount of work may be reduced, for example, Colton will have 10 division problems to do while the rest of the class has 20, but the level of the work does not change.
His teachers say he is at the eleventh grade spelling level and he is very good at math. Colton got an A+ in science on his last report card. This is the first year that he has not had any behaviors at school, "which is unheard of," said his mother, Lori. Colton does not take music or a language class to free up time for therapy and learning support. He also does not take tech ed. because of the safety issue.
"His computer skills are amazing," Lori said. "If he doesn't know something, he looks it up on the Internet. And he can remember anything. He really makes you feel dumb sometimes."
His specialty is remembering birth and death dates. He can also tell you the names of the producers and actors in a movie after watching the credits roll by just one time. "He likes old movies," said Colton's dad, Jim. "He could talk to your grandmother about movies and you'd have no idea what they were talking about."
Lori said he is on the computer all the time. She said somehow he has actually hacked into people's websites in other countries and changed their passwords. He likes to go onto ancestory.com; he has made a family tree for everyone in his family. "He is very good at research," Colton's dad, Jim, said.
"He's got the best of everything, but it's been a struggle," said Lori. "We have had to fight for everything he's gotten. The thing that is my biggest concern, and what I always have to explain to teachers, is that he's not going to come out of his world - you need to go into his." His teacher this year is Danielle Smith, who is the "best teacher he has ever had," said Lori. "She totally gets it." One thing that is very important for Colton is a schedule. He likes to know exactly when things are going to happen and to stay on track, which is a good thing for anyone.
"Octorara provides the model program for students on the spectrum," said Lori. She attributes much of Colton's success to Octorara putting supports in place and everyone collaborating and working together to meet Colton's needs. "They have really stepped up to the plate and have gotten Colton the appropriate services and programming that he needs."
Colton has been with the same group of kids since kindergarten and is very well known. She talked about a time when his class was playing hockey in gym class and all of the kids, without being asked, just stopped and let Colton score a goal. "Kids are so good to him," said Lori, "and there are so many examples like that. He's not bullied at all, because he's nice, the kids know how smart he is, and he looks normal, which is good and bad." Lori explained that a downside to him looking like a regular kid is that if he does have an outburst, people don't understand, and strangers often give her nasty looks.
According to the Autism Society of America, both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Colton has no social skills, "he says it like it is," Lori, said. If he thinks it's time for a visitor to leave his house, he will tell them they need to go; if he wants someone to stop talking, he will say so. "He needs to work on relating to other people," said Lori.
"I am independent," said Colton, "I don't like people." His mother has tried to have birthday parties for him and invite kids over to hang out, but has had no success. "He relates well with younger children though, because he likes some of the same things, cartoons for example," Lori said.
Colton loves to ride amusement park rides and go on vacation. The Youngs often drive to the beach in the summer. "You can't get him out of the water," said Jim. "He even went clamming this year." Jim laughed as he recalled that Colton dumped a big bucket of clams back into the water. When he saw the empty bucket and asked where the clams are, Colton simply said, "they're gone."
Lori said in the future she predicts Colton will be able to live on his own and can go to college if he wants to. He will need to have a job without much contact with people. His dad says he's going to be the next Bill Gates. "With that kind of concentration though, he should be a pitcher in baseball," Jim said.
When Colton was just two years old, his parents noticed that he had not begun to babble or make any other attempts at language. They were also alarmed by the fact that he wasn't showing affection to either one of them or anyone else. The first suggestion from their family doctor was to have his hearing checked when he was two years old, which turned out to be fine.
They started Colton in early intervention, which was paid for by the Department of Welfare because he was still under the age of three. He was set up with a speech therapist and an occupational therapist. Because of the way the system is set up, when Colton turned three, the Department of Education took over the funding. Unfortunately at this time he also had to switch therapists and have new evaluations done, because Octorara is located in Chester County and Colton's current therapists were employed in Lancaster County.
One therapist thought he was showing signs of MHMR, including spinning in circles and flapping his hands. "Even though I'm a special education teacher," said Lori, "when it's your child, you're still in denial."
The Department of Education also had Colton see a pediatric neurologist, Dr. Steven Gottlieb. He officially diagnosed Colton with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), sometimes referred to as atypical autism. "When I heard that, I was thrilled that a doctor was finally giving Colton a diagnosis," said Lori. "I knew that I would be able to get him services since we finally had a diagnosis. That is why it was critical that Colton be diagnosed. Early on, doctors would only say that Colton had developmental delays. PDD is like the umbrella term and autism, asberger's, etc., fall under that category. Colton does have autism listed on his IEP. The terms are pretty much interchangeable. "
Colton began pre-school in the Baby Bear Room at Maple Grove in Atglen at the age of three. The director was nervous about enrolling him in the standard class. Lori contacted the I.U. to see what they could do to help alleviate the director's concern. From that year on, Colton has had a special education itinerary teacher with him at all times.
He continued to take occupational therapy and see a speech therapist in his home. At the age of four he began taking early intervention classes at Octorara. "There were a lot of students in the class with various needs," said Lori. "I didn't feel his needs were being met; the class was just too diverse." At that point, Young transferred to Head Start, Coatesville's early intervention class, which is comprised only of students with autism.
He remained in this class for one year, until it was time to start kindergarten. "Then we had a really important decision to make," said Lori.
The school recommended that Young be placed in the life skills class. "I knew that was totally inappropriate," said Lori. "Most of the students had very severe limitations and the class was social based, not academic."
At this point, Colton was beginning to talk and was acquiring large motor skills. "He was very bright," said Lori, "we wanted him to go a full day." He began participating in the regular kindergarten class in the afternoons and continued taking the life skills class in the mornings with Mrs. Smallwood. In December of 2000, half way through Colton's kindergarten year, Octorara opened up an autism support classroom, so he transferred to this class in the mornings.
"He would stay in regular kindergarten as long as he could handle it," Lori said as she explained that Colton used to have a lot of behaviors. "It was awful," she said. "He was probably sent home 20-25 times when he was in first and second grade."
By the time Colton started second grade, the original teacher of the autism support class had left, and Lori was not happy with the replacement. "He's so smart," she said, "and their concern was with behaviors." Her other concern with having her son enrolled in the autism support class was that he took to modeling what he was seeing. It was holding him back more than helping him to grow.
In second grade he started total inclusion. "The school was really nervous," Lori said. "You name it, he's done it; he's escaped, ripped wallpaper." Lori talked about a time when the school principal left Colton alone in his office, only to come back to find bite marks in his new desk. "We had an autism select team with the Chester County I.U. It wasn't uncommon to have 20 people there to put their heads together to figure out how to make this work for him," Lori said.
Colton was also meeting with a TSS (therapeutic support specialist) and a BSC (behavioral support coordinator) at home. Nina Wall-Cote', currently the Director of the Bureau of Autism Services, was his behavioral specialist. Wall-Cote' recently spoke at the Octorara Middle School about current initiatives within the bureau. Debbie Davis, his TSS, taught Colton the Picture Exchange System (communicating through pictures as opposed to words) and used Discrete Trial as a means of teaching.
He started working with Davis when he was three years old, and when he started going to school fulltime, his mother requested that she be with him all day, every year. As a TSS, however, Davis was limited to providing only behavioral services as stipulated by the Department of Public Welfare. In order to also work on academics with Colton, her title had to be changed to Personal Care Assistant (PCA), which is a service generally funded by the school district or I.U. Donna Williams of the Chester County Respite Network helped to get Davis the correct title and into Octorara so she could stay with Colton.
By fourth grade, Colton was totally included with very few problems. Lori said Michelle Moran, the guidance counselor at Octorara Elementary, "worked really hard to make sure Colton succeeded. She was absolutely phenomenal. We really miss her." She also talked about Rich DiObilda, the director of special education at Octorara. "He goes above and beyond," Lori said. "He works extremely hard to help implement an IEP that is appropriate for each child. Mr. DiObilda does whatever it takes for a child to make progress. Anything Colton has ever needed, he has gotten for him, whether it be a laptop, a cushion for his chair, or even paying for his one-on-one (with Davis)." Colton is permitted to use his laptop for in-class writing assignments and as part of a reward system.
Since being diagnosed, Colton has become a little more affectionate. Lori said he will give his family hugs, but they have to ask for them, he will never volunteer one. She also said that he pretends a lot of emotions. For example, if something happens that he knows he should react to by crying, Colton will act like he is crying
He has also become much more outgoing. When he was younger, he used to scream and become very aggressive when he had to leave the house. He is more willing to go places now.
"There used to be constant screaming," said Jim. "He had the opposite behavior than what you would want." Lori said he once flushed her reading glasses down the toilet, and they had to buy a new one. He also used to leave the house, so they could never let him out of their sight." They still have to keep a close eye on him, but his behavior is much better. He is more willing to get dressed in the morning and brush his teeth as well.
Colton also has a habit of picking apart the fabric of his clothing and biting the paint and erasers off of his pencils. He still has some of his old habits, but is now more secretive about his behaviors.
He currently takes three different medications, one for treating ADHD, which he was also diagnosed with years ago, another to lower his blood pressure, and a third, which is supposed to be for impulsivity. "It still does-n't curb things," Lori said about the third medication. "But if he doesn't have his medications, look out!"
His dad said Colton is a very picky eater. "We have McDonalds every Friday, but he would eat it for every meal if he could," Jim said. Colton eats when he's hungry, but rarely sits down at the table for meals with his family. "You have to pick your battles," said Lori. "If he's hungry, he will eat."
This was the first year that Colton sat down with his family for Christmas dinner. "Christmas was wonderful this year," Lori said. "He was thrilled." She said one habit he has not broken is that every year after opening presents he names everything that he did not get. This year he asked for DVDs and items to add to his Peanuts collection. Colton did a beautiful job decorating the family Christmas tree by himself this year.
While Colton's history with autism has become a success story, Lori said, "one should keep in mind that autism is a spectrum disorder and it affects each individual differently and at varying degrees-this is why early diagnosis is so crucial. Even with my job in special education, I knew nothing about autism. There just wasn't any information out there. By learning the signs, a child can begin benefiting from one of the many specialized intervention programs. Thank goodness for the No Child Left Behind, which has given us the support to get him included in all inclusive."
Colton has a 14-year-old sister named Courtney; she is a freshman at Octorara. Lori said it can be really hard on her sometimes, but she has recently become best friends with a girl named Jackie who has two autistic sisters. "Jackie has really been a great support for her," Lori said. "They can talk about things with each other that no one else would understand."
Courtney has learned that the best way to react when Colton has one of his meltdowns is to quietly go into her room and shut the door. "She knows not to fight back," said Lori.
Lori's two-year-old nephew was recently diagnosed with autism. She said her sister went through the denial stage, as most parents do, but has since started to come around. The worst part, Lori said, is that she took him to three different specialists, and their respective diagnosis' were yes, no, and maybe. There are absolutely no standards in diagnosis. Her sister, Christine, who lives in Erie, just started her son, Major, in early intervention.
Lori and Jim said they had a hunch for a long time that Major may be autistic. "He makes no eye contact," said Jim, "and he doesn't want to be held. I held him in my arms and he leaned away." Lori said when Colton saw his cousin a while ago, he said, "Major has autism just like me," and that was long before his diagnosis. She said he can always tell just by looking at someone if they are autistic.
According to the Autism Society of America, "A 2007 Centers for Disease Control report found that 1 in 150 children in America today have an autism spectrum disorder (ASD). ASA estimates that 1.5 million Americans and their families are now affected." And this number is on the rise. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade. Autism is a national health crisis, currently costing the U.S. at least $35 billion annually.
Lori stressed the importance of challenging the system if a parent finds it necessary. "Most of the kids he started out with are still in the autism support programs and haven't made the progress," Lori said." The number one advocate for the child is the parent."