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Living with Autism

Thomas Cleek has a mild form of autism, and like other children with the disorder, he needs help learning
to communicate
Friday, April 9, 2004 | 12:00 a.m. CDT; updated 6:45 p.m. CDT, Saturday, July 19, 2008

Four-year-old Thomas Cleek has a toothy grin and bright blue eyes that peer from underneath his tousled blond bowl cut — a sunniness that wasn’t there nine months ago when Thomas was plagued by aggressive, potentially dangerous tantrums and could hardly talk.

Thomas’ outbursts led him to be diagnosed with PDD-NOS, Pervasive Developmental Disorder — Not Otherwise Specified, a mild degree of autism, in February 2002.

As early as age 2, Thomas threw tantrums where he overturned his family’s wooden coffee table. He threw himself on the ground in the parking lots of stores and would scratch and pinch his mother, Heather Cleek, and pull her hair.

“We knew he was smart and couldn’t tell what to say,” Heather Cleek said.

[photo]

Thomas reads a book with his mother during one of his therapy sessions.

Amanda Bunch, area team leader at Judevine Center for Autism, evaluates Thomas’ parent-child “work sessions” once a month through the Family Support Services program at the center. She said Thomas probably exhibited aggressive behavior because he was incapable of expressing his needs.

Making a diagnosis

Nearly 50 percent of autistic children cannot communicate through speech, says Matt Stoelb, research specialist for the MU Assessment and Consultation Clinic Autism Project.

There are more than 100 children with autism in the Columbia Public School District, including those in the early childhood program.

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Thomas stretches to see what his mother, Heather Cleek, is pointing at during one of their daily work sessions in their home to improve Thomas' mental, social and behavioral development.

But the total number of autistic children is difficult to calculate. Most children with a learning disability in the early childhood program are labeled as “young child with a developmental disability.” Some of these children may later be diagnosed with autism.

There are two types of diagnoses for autism: educational and medical. Those with a medical diagnosis do not always need assistance in the classroom.

A medical diagnosis can be made at the Children’s Hospital Center for Autistic Disorders in Columbia.

A Missouri Families for Effective Autism Treatment brochure says that “although autism is defined by a certain set of behaviors, children can exhibit any combination of the behaviors in any degree of severity.”

In other words, autism is a spectrum disorder. Asperger’s and Rett’s syndrome, as well as PDD-NOS, all appear on that spectrum, according to the Missouri families group.

Getting help

Concerned because Thomas was developing much slower than their two older children, Heather and John Cleek took him to the pediatrician when he was 18 months old. The pediatrician told the couple that it was typical for a third child to be slightly behind.

[photo]

Thomas returns to his therapy session with Mayes after taking a play break at his home. As part of a reward system employed by Mayes, Thomas gets to take regular breaks from his mental and behavioral exercises to play a short game of his choice.

When aggressive behavior set in and Thomas lost his ability to speak at 22 months, the Cleeks began to suspect that something was really wrong with their son.

Beginning in October 2001, when he was not quite 2, Thomas was examined by a slew of doctors, including a speech pathologist, child psychologist and physical therapist, at clinics such as the Central Missouri Regional Center and, finally, the Judevine Center in February 2002.

At Judevine, the Cleeks were placed on a waiting list. The center assesses each child referred to it to make sure that the child needs the services the center offers. Judevine serves about 300 families a month across a 49-county area.

“There’s an increase in the number of students identified with autism,” said Janine Stichter, associate professor of special education at MU. “I say it that way because I don’t know that we’re convinced that the actual number of children has increased over the years, but maybe that we’re doing a better job identifying them.”

Heather Cleek attended a three-week parent training session in the summer of 2002, offered by Judevine free to families.

A trainer worked with Thomas while teaching his family how to help him learn from his environment.

These “work sessions” emphasize behavior therapy, sensory integration and communication therapy.

Bunch says many autistic children like Thomas need to have a set structure, telling them what will be happening and what is expected of them.

Sessions include an egg timer so the child can learn to intuit how long the lessons will last. The ticking of the timer helps the child hear the time, and the timer’s moving arm offers a visual reference.

Diet can be a factor

The Cleeks also attended a workshop on diet sponsored by Judevine. Stoelb said some researchers believe a build-up of the proteins gluten and casein can be toxic to the systems of some children with autism. Some say the accumulation of these proteins is a possible cause of autism.

The workshop motivated the Cleeks to have Thomas tested for allergies. He was found to be allergic to gluten, which is found in wheat; caseins, found in dairy products; and a variety of other foods such as soy, rice, celery, corn, pork and many fruits.

Heather Cleek said these proteins act like a drug in the child’s system, creating a kind of high.

This protein imbalance explained why Thomas was unusually strong for his age. The desire for these proteins prompted Thomas to rummage for cheese in the refrigerator and eat three or four pieces before someone stopped him.

The family was forced to put a lock on the refrigerator, which is still in place.

The Cleeks started Thomas on a gluten- and casein-free diet last May. They were told it would take three weeks for dairy to exit his system and six months for wheat, barley and oats. Four months after starting the diet, Thomas’ language skills started to increase, and by the sixth month, his language skills were “unbelievable,” according to Heather Cleek.

The Cleeks relied on Judevine’s crisis intervention program after Heather Cleek injured her arm in a car accident and was unable to care for Thomas. The Cleeks regularly attend Family Connections, a support group for parents with autism, as well as specialized groups like the Music Group and Sib Shop.

The Sib Shop meets concurrently with Family Connections. It is designed to help siblings of children with autism understand the characteristics of autism and why their brother or sister is receiving special attention.

Thomas has made substantial progress through a combination of services: sessions at Judevine, applied behavior analysis therapy, early childhood special education assistance in speech, occupational therapy, physical therapy, academic services from Boone County Group Homes and Family Services and therapeutic horseback riding at Cedar Creek Therapeutic Riding Center.

Thomas said “I love you” to his mother for the first time two months ago while attending church services at Our Lady of Lourdes.

“He had always been very affectionate: He gave me kisses at least 200 times a day, literally,” Heather Cleek said. “It was very emotional for me because I’d accepted that he’d never even say ‘I love you.’”

Bunch said other parents get emotional over a simple hug because many autistic children don’t show emotion. Some children even avoid eye contact.

Thomas will still need assistance when he starts school. The Cleeks are considering a combination of public school and home schooling. Heather Cleek has a master’s degree in early childhood special education, and their two other children are home-schooled.

Local services

The Columbia Public School District offers a wide range of services for children with autism, tailored to individual needs. The district organizes workshops, parent training and social events.

Students who need constant care receive one-on-one help in a “self-contained classroom.” Children with less-severe cases are placed in “multi-categorical classrooms,” where children spend time working in small groups. The students also spend a little time in mainstream classrooms. Other students spend most of their time in mainstream classrooms and receive periodic help from a resource teacher in a particular academic area.

Most students with autism receive speech therapy. If a student is working on social language, the resource teacher spends time assisting the child in his or her classroom.

The district also offers “class within a class,” where special-needs students mix with other children. A learning specialist assists the teacher in “class-within-a-class” situations.

Some children attend a mainstream classroom during the day, and meet with a learning specialist before and after school. The specialists help the child get organized, making sure they have everything they need to complete their schoolwork before heading home.

Occasionally the learning specialist will hold a study hall. Such sessions are valuable to autistic children because most are extremely disorganized, said Karen Potter, one of two autism resource specialists for the district.

“About one-third to one-half [of children with autism] can function normally with a few years of intensive intervention, and won’t need professional help thereafter,” Stoelb said. “They will lose the diagnosis.”

Changing behavior patterns

The Assessment and Consultation Clinic at MU, where Stoelb works, offers intensive behavioral intervention programs. The programs use applied behavior analysis, discrete trial training and video modeling, among other intervention strategies, during 10 to 40 hours of instruction a week.

Applied behavior analysis therapy focuses on the child’s environment and tries to change or reduce unwanted behaviors by replacing them with more acceptable behaviors. Unwanted behaviors receive no attention, while desirable behavior is rewarded.

Discrete skills needed to improve functioning, like imitating speech, initiating conversations, tying shoes and playing a board game are taught through discrete trial training.

During video modeling, a person is videotaped performing a behavior or skill the child needs to learn. The child imitates the action, which could be playing with a certain toy or answering a question.

These highly structured sessions are usually administered one-on-one, and often begin by encouraging children to imitate sounds, actions or words. Children are also taught to use and understand language, to play and to complete self-care activities like washing their hands, dressing, using the toilet or preparing a simple meal.

The public school district also uses behavior analysis, among other methods.

“However, while the schools are improving in our services for autism, there is a tremendous need for an increase in supports for adults across the spectrum,” said Julie Donnelly, an autism resource specialist for the district.

Adults with autism can also receive assistance. Central Missouri Regional Center has programming that includes therapy, community training and financial assistance.

Boone County Group Homes and Family Supports offers services for people with disabilities ranging from infants to senior citizens. One program created for adults is employment assistance in obtaining and maintaining a job.

Judevine provides programs that help adults with autism learn the skills needed to function in the community.

Central Missouri Sheltered Enterprises offers adults with disabilities vocational training and employment opportunities.

To help out

For those who would like to contribute to services for people with autism, Judevine is hosting the first Bowling for Autism Tournament on April 17 at Oakland Plaza Lanes at 11 a.m. All funds raised through entry fees, donations and a silent auction will benefit the Judevine Autism Project. Lunch will be provided. For more information, contact chairperson John Cleek Jr. at 449-1010.

The 2004 National Autism Symposium, sponsored by the Missouri Department of Mental Health will be at Tan-Tar-A Resort in Lake of the Ozarks from May 20 to 22. Call the Division of Mental Retardation and Developmental Disabilities at 573-751-4054 for more information.

Missourians with Autism

Data was collected between July 2003 and February 2004, from 423 Missouri families affected by an autistic child. Thirty percent of respondents were from central Missouri. Information was provided by Dana Lee Baker and Sarah Smith from the Truman School of Public Affairs and the Institute of Public Policy.

  • 77 percent of families surveyed feel their family’s public or community activities are restricted because of their children’s autism.
  • 70 percent of families surveyed feel there are autism-related services they need but are not receiving.
  • 43 percent of families surveyed have had financial problems in the past year because of their children’s autism.
  • 86 percent of families surveyed think their children will require assistance as an adult as a result of their autism.
  • 83 percent of children with autism in families surveyed who are boys.

To Learn More

Autism Center at University Hospital, 573-884-1871

Autism Society of America, www.autism-society.org

Boone County Group Homes and Family Services, 874-1995 or www.bcghfs.org

Cedar Creek Therapeutic Riding Center, 875-8556 or http://cedarcreek.missouri.org

Central Missouri Regional Center, 882-9835 or http://onestop.missouri.org/Centralmissouriregionalcenter.htm

Central Missouri Sheltered Enterprises, 442-6935 or www.cmse.org

Columbia Public Schools Special Education,

214-3958 or www.columbia.k12.mo.us/speced/specialed/

Division of Mental Retardation and Developmental Disabilities, Missouri Autism Project, 573-751-4054 or www.dmh.missouri.gov/mrdd/

Judevine Center for Autism, Central Missouri Autism Project, 874-3777 or www.judevine.org

Missouri Families for Effective Autism Treatment, www.mo-feat.org

MU Assessment and Consultation Clinic Autism Project, Matt Stoelb at 882-0987 or http://acc.coe.missouri.edu/autism.htm.


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