Challenges of Autism

[By Heather Wilkerson, The Wilson Daily Times, North Carolina.]

http://www.wilsondaily.com/cgi-bin/contents.pl?ed=011202&id=Li&sec=Lifestyle&fmt=web

      When Laura Taylor goes to the Wilson County Public Library, she picks out a book and wants to turn each page with one finger in a ritualistic method, even if it's 500 pages. Then she might start laughing uncontrollably or, for a reason only known to Laura, hit her sister.
      On a recent trip to the library, Laura picked up the small American flag on display at the counter and slammed it back down. The librarian spoke sharply to Laura. Laura just walked away, unfazed by what the clerk had said.
      On the outside, Laura looks like a regular 10-year-old girl. She has no physical features that would cause a person to think anything was wrong with her.
      But there is something wrong with Laura — something she and her family deal with each and every day of their lives.
      Laura has autism. And she always will.
      Autism, as defined by the Autism Society of North Carolina, is a developmental disability that affects a person's ability to properly understand what they see, hear and otherwise sense. The result of a neurological disorder that affects functioning of the brain, autism and its associated behaviors occur in about 1 in 500 people.
      People are born with autism. There is no cure, but the disorder can be managed.
      Learning how to manage Laura's autism has been an ongoing learning experience for her family. Laura lives with her mother, Melissa Moss, her stepdad, Craig Moss and her sister, Britt.
      It's been seven years since Laura was diagnosed with autism. Over that period, Melissa Moss has become an expert of sorts, embracing all the information she can to learn about her daughter's condition.
      Moss has a vast knowledge of autism. She has served as secretary on the board of directors for the Autism Society of North Carolina and is the contact for Wilson families dealing with autism.
      When she lived in Edgecombe County, Moss wanted to start a tri-county (Wilson, Nash, Edgecombe) support group but had a hard time getting participation from all three places. So the support group ended up being just the Edgecombe County unit.
      When Moss moved to Wilson, she was able to start the Wilson County unit. She distributed fliers to the Wilson County Schools central office to be passed out to all classes with autistic children. The group's first meeting was Sept. 11. With the events that happened in New York that day, turnout was not good. But the support group has met three times since then with 12-20 people attending.
      Moss started the support group, she said, to help others through the struggle of trying to raise an autistic child.
      "I want to make them aware of services out there and tell them what I know," Moss said. "I want them to know the things that I had to find out by calling and digging for information."
      Teresa Peterson has been to a couple of the support group meetings.
      "It is interesting to sit there and listen to people talk about their challenges," she said. "You really can learn a lot from each other."
      Peterson was excited to see not only parents of autistic children, but teachers, siblings and other interested parties there.
      Peterson's son, 8-year-old Nathan, is a high-functioning autistic child with Asperger Syndrome. Asperger Syndrome is a disorder named for physician Hans Asperger, who in 1944 published a paper that described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors.
      Nathan does exhibit common characteristics of autism — the need for set routines, the inability to deal with change sensory problems, inappropriate outbursts and trouble with social cues — but he is in a regular third-grade classroom at Wells Elementary School. He, like Laura, exhibits no physical features that would make people think anything was wrong with him.
      Nathan tests at or above grade level in some subjects, his mother said. Like many children with Asperger Syndrome, he particularly likes logical subjects, such as math and science. Nathan's problem is with more abstract subjects such as English. For his problem areas, Nathan is pulled from his classroom for one-on-one instruction.
      There are only a couple of children in the Wilson County School system with Asperger Syndrome, so the Peterson family is always looking for support and services available for Nathan.
      Christy Grant, the transition coordinator with Wilson County Schools, helped Peterson with a list of services available to her. Peterson learned her son could get Social Security disability and Medicaid. The family has gone through the interview process with Wilson-Greene Mental Health to get services from that agency, too.
      Peterson can share all of this knowledge with the support group.
      "I'm anxious to see the group draw in more people," she said, "so we can not only educate each other, but also the general public."
      Raising an autistic child is a constant learning process, Peterson said.
      "Every day with Nathan is different," she said. "Even though he is very much on a schedule, every day is different."
      Dianne Stott is the mother of an 11-year-old autistic child. She, too, views the support group as a "coming together of minds."
      "It offers so much support," she said. "You can laugh and cry with people who are going through the same things you are. We can put our minds together and get the word out about resources."
      Stott said she would be excited to see the group grow. "It's such a good place to find ideas. They'll be missing out on the support they can get if they don't come."
      The group meets monthly at Raleigh Road Baptist Church, where Laura and her family are members.
      The next meeting is Jan. 15 at 7 p.m.
     
      Laura's story
      Laura was born May 15, 1991. She communicated verbally until she was 1, but after that, she did not speak for several years.
      "I knew something was different when she was a year old," Moss said.
      In addition to her sudden absence of speech, Laura began to avoid eye contact. She lost interest in humans, except her mother. Laura preferred to play alone, would only eat a few foods and had more sleepless nights than her mom cares to remember.
      Laura started doing odd things, Moss recalls.
      One night, Moss found her missing from her bed. She found Laura sitting in the bathroom sink eating toothpaste.
      Laura would take all of the books off her grandparents' bookcase and climb to the very top. Moss found her daughter on top of the refrigerator one night.
      After seeing several doctors, Laura was finally diagnosed with autism in March 1994.
      "I was devastated," her mom said.
      Raising a daughter with autism is sometimes hard, Moss said.
      But, seven years and many, many struggles later, Laura is improving.
      "Laura is much better now," Moss said, "although she will still laugh inappropriately at times or wiggle a lot while sitting in church or will often hit her sister for a reason that only Laura knows."
      Twelve-year-old Britt is her mother's helper. "I don't know what I would do without her," Moss said.
     
      Getting help
      Moss attributes Laura's improved behavior to prayer, medication, lots of hard work and understanding from family and teachers.
      Laura attends Raleigh Road Baptist Church. She stays in the regular service and enjoys listening to the music. Laura is accepted at the church. The family feels comfortable there and is not exposed to the sometimes hateful glares of onlookers.
      Laura's improved behavior can also be credited to her CAP worker, Brittany Turner.
      CAP stands for Community Alternative Program. Turner is employed by the Autism Society of North Carolina. She is typically with Laura from about 2:30 in the afternoon until around 7 or 8 at night.
      Laura, like many people with autism, has a routine, Turner said.
      "She comes home, puts her bookbag up and then takes her shoes off," she said.
      Then Laura and Turner do "table work." Upstairs, in the comfort of her bedroom, Laura is quizzed on words, numbers, letters of the alphabet and colors.
      "Cat," Laura will say when Turner holds up the card with a photo and the word C-A-T spelled out. When Laura does well, Turner draws a star on her hand with a scented marker.
      "Good job, Laura," Turner will repeat.
      Afternoons call for leisure time too.
      "Having autism doesn't mean Laura doesn't enjoy the same activities as other children," Turner said.
      Laura likes watching videos and doing arts and crafts. She goes on outings too. Michael's Pet World is her favorite place to visit.
      Turner often prepares a schedule for Laura. She will place pictures on a board of things the pair are going to do.
      "It's easier for her to look at the board and see, 'OK, we are going to Wal-Mart, then we're going to come home, take a bath, then help fix supper.'" Turner said.
      As each activity is finished, the picture in placed in the "done" box.
      The need for routine is just one of the many common characteristics in a child who has autism. The Autism Society stresses that characteristics may differ markedly from person to person.
      While Laura does exhibit several characteristics of autism, all those who know her will tell you how affectionate and loving she is.
      "Having autism doesn't mean that Laura is stupid or deaf," Moss said. "She just has problems communicating."
      Directions may have to be repeated for Laura to process the information and visual cues may have to be used, but she can understand, her mom said.
      Laura is an a self-contained autistic classroom at Lee Woodard Elementary School. Her teacher is Jennifer Doughtery.
      Doughtery teaches seven autistic children, "so I have seven different curriculums," she said.
      Autism can occur by itself or with other developmental disabilities such as mental retardation and epilepsy. A person's level can range from mild to severe.
      All of Doughtery's students are on different levels. "I teach everything from functional life skills like how to dress yourself, to things like colors and multiplication tables."
      Some students can't read at all. Others can read on a third-grade level.
      Early diagnosis and intervention is important when dealing with an autistic child. According to the Autism Society, studies have shown that all people with autism can improve with proper individualized instruction.
      All of Doughtery's students have an individualized education plan.
      When Nathan first entered the Wilson County Schools system, his mother was overwhelmed with the faculty's efforts to help.
      "It's an incredible thing to see all these people wanting to help your kid get the best education possible," Peterson said. "It's really been a blessing."
      People with autism can learn many things through specialized instruction. Using structured programs that emphasize individual instruction, many people with autism have learned to function at home and in the community. Some people with autism are able to have jobs, use public transportation, drive a vehicle and lead fairly normal lives.
      It is Moss's hope that the autism support group will draw people who have autistic children of any age. People who just want to learn more about the disorder are welcome also.
      "It is understandable to see frustration from other people because they don't understand," Moss said. "What I would like for people to do is think about how a person is behaving and consider that there may be a problem such as autism, not that it's just a child or adult acting inappropriately."