He was helping his dad play "Lord of the Rings" pinball and his mother helped him with two racing video games. Tyler went from machine to machine, talking almost constantly. Two years ago, his parents could only dream of Tyler acting like other children his age.
Tyler has autism, the fastest-growing developmental disability among children. The number of children diagnosed with autism has risen from 1 in 2,000 15 years ago, to 1 in 250 two years ago to 1 in 166 today.
A child with autism is unable to relate to or communicate with others. For a parent, the diagnosis is devastating.
"It was like somebody had just punched me in the stomach," said Tyler's mother, Annette Ferris. "I felt like I couldn't even breathe. I was very angry, the way it came out, that someone was saying there was something wrong with my child and I didn't even know what autism was."
|Some of the symptoms of autism include: |
- Delayed development of speech, lack of speech or unable to carry on a conversation with others.
- Lack of interaction or response to people.
- Repeats something over and over.
- Lack of varied, make-believe play.
- Inflexible to change in routine; unreasonable insistence on following routines in precise detail.
- Distress over trivial changes in surroundings.
- Abnormal preoccupation with parts of an object.
- Abnormal preoccupation with one narrow interest.
Copley News Service
Looking back, she said Tyler showed many of the symptoms. When Tyler was 14 months old, he started acting like he was deaf. He wouldn't turn around when his parents called his name, and when they clapped their hands behind him "he wouldn't even flinch."
By 16 months, he lost all eye contact with people. He had started to say words, like dada and mama, but at 18 months, he stopped talking. Tyler preferred to sit and play by himself for hours at a time and didn't want to interact with anyone. While normal children might have a temper tantrum that lasts five or 10 minutes, Tyler's would go on for 40 or 45 minutes, sometimes eight times a day.
His parents could not take Tyler to a grocery store or restaurant; he didn't like change.
"I felt like I was a prisoner," Ferris said. "I felt like this child hates me. What am I doing wrong? It was a living hell."
When Tyler was 22 months old, he was taken to a local ear, nose and throat doctor for a hearing test and because he was having chronic ear infections. She had always taken Tyler for all of his normal pediatric checkups, so as she was talking to the specialist, she received a shock.
"He said, 'You know, Mrs. Ferris, I don't think you need to be as concerned about his hearing. I think you need to be worried about autism.'"
Arrangements were made for Tyler to be tested in Iowa City, Iowa, but there was a four-month wait.
Ferris met a woman who said her granddaughter had a speech-delay problem. The woman told her about an early intervention program available in Illinois to help children.
Ferris called the local office of Child and Family Connections, in Roseville. The CFC sent speech language pathologists, developmental therapists, physical therapists and occupational therapists to her home to screen Tyler. He qualified for the state's early intervention program.
Every child in Illinois from birth to 3 years is eligible. Therapists started working with Tyler at his home and once he was diagnosed in Iowa City, the intervention program was modified to address his needs.
|Today an estimated 1 in 166 children born develop autism; 10 to 15 years ago the number was 1 in 2,000 to 2,500. |
Growth comparison during the 1990s
- U.S. population increase: 13 percent
- Disabilities increase: 16 percent
- Autism increase: 172 percent
Annual cost to treat autism is $90 billion. In 10 years, the annual cost will be $200-$400 billion.
90 percent of costs are in adult services.
Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.
Source: Autism Society of America
Ferris met Shelly Hawk, the owner of Child Development Associates. Her developmental therapists worked with Tyler along with other specialists from the CFC.
Hawk said early diagnosis and intervention is important for children with autism.
"The prognosis is different for every child," Hawk said. "With appropriate treatment, the prognosis is good."
Hawk said the children she treats do not interact socially. They may be able to say words, but they can't carry on a conversation. Some will repeat the same thing over and over.
Autistic children also do functional play, like running a car back and forth, but they can't do pretend play based on creative thought, Hawk said.
Working with children up to age 3, the therapists try to teach autistic children to communicate and relate to others.
Once a child turns 3, his education becomes the responsibility of the local school district. In Illinois education must be provided for developmentally disabled children up to age 21.
The Knox-Warren Special Education District autism team has four members. They evaluate a child and develop an individualized program for the child based on the assessment. They currently service 35 children with autism. Depending on needs, the child's education can range from general education classes with minimal support to spending the entire day in a special education classroom.
When Tyler turned 3 he was enrolled in the Bright Futures program. He attends school for 2 1/2 hours a day during the week. He is the only child in his class with autism. Speech language pathologist Suzanne Chatterton said one goal is to help children develop functional communication.
"Often interventions are started with gestures, eye contact and nonverbal exchanges," Chatterton said. "Children often use pictures to communicate ... until they are ready to use verbal exchanges."
Social worker Melissa McCullough said parents are an important part of the program and are incorporated into the intervention program. Educators work as a team and the parents become part of the team.
Some children, like Tyler, already have started to receive intervention therapy. Others aren't diagnosed until they enter the program. Once a child is old enough to enter kindergarten, the child attends school all day. Depending on the severity of the autism, children are placed in the general classroom whenever possible. This can help them interact with others and develop social skills. Some may be pulled out of class for specialized instruction during part of the day.
Autistic children in the district can earn high school credits, some earn special education credits, and those with severe autism are taught "life skills."
Depending on the progress the child makes, around age 14, transitional planning begins. Outside agencies, like Warren Achievement and Stone-Hayes, are brought in to plan the child's future.
Every autistic child is unique, but with proper intervention, Hawk estimates over half will become functional, productive adults.
According to the Autism Society of America, the annual cost to treat autism is $90 billion. However, the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.
The cause of autism is not known, although there are many theories. The Knox-Warren Special Education autism team regularly attends seminars and says intervention techniques continue to improve. Many autistic children have normal intelligence, which becomes apparent once they learn to communicate with others.
In Tyler's case, Ferris anticipates a full recovery. Ferris discovered Tyler had digestive problems and his body was unable to break down certain foods. He is on a special diet and takes supplements. He also receives private therapy two hours a week in addition to therapy at school.
Tyler still has problems to overcome, but academically, he knows the alphabet, colors and shapes, and can count.
When asked to count, Tyler counted his fingers in Spanish as well as English. He said "Thomas the Tank Engine and Friends" is his favorite television show and he likes to play with his Thomas the Tank toys.
Ferris has joined the Quad Cities Biomedical Autism Group that meets monthly. She found two mentors in the group who helped her and now she is mentoring parents new to the group. She is willing to discuss her experiences with parents of autistic children and can be contacted by e-mail at [email protected]
Ferris admitted it takes a lot of work and effort on the part of parents to help their children become more like a normal child, but for her, it is worth the effort. Her advice to parents is simple.
"There is hope," Ferris said. "Never give up because great recoveries are possible."