As the caseload increases the support system grows

HEALTH | Jolonda Young

When Teresa Paul’s son, Sean, was born, she dreamed of the day when he would graduate from college, get married and have children of his own. Like many new moms, she was excited to take her baby home, and she looked forward to watching Sean grow and reach developmental milestones, such as sitting up alone, walking and talking.

Nine months after Sean’s birth, Paul, a Taylorville resident, noticed that unlike most other babies his age, Sean was not babbling, nor could he sit up alone. And while most babies take their first steps around 12 months of age, Sean didn’t begin walking until just before his second birthday. Having heard that it is not uncommon for boys to reach developmental stages a little slower than girls, Paul figured that Sean was simply a “late bloomer” and that he would eventually catch up.

As Sean continued to lag behind his peers, Paul became increasingly concerned. At two years of age, he received an extensive medical evaluation and was diagnosed with Autism Spectrum Disorder (ASD), an umbrella term used to describe a wide range of neurological disorders affecting an individual’s communication, social interaction and behavior.

“It was devastating, a dying of dreams.

Not only would my son not have the life that I’d dreamed, he would probably not have friends, and would always need daily care,” Paul stated.

Following the diagnosis, Paul immediately began educating herself and being an advocate for her son, seeking therapy to help improve his speech and occupational therapy to teach him daily grooming tasks.

Today, Sean Paul, who is 16 and is in his second year at Taylorville Community High School, still keeps to himself, often preferring to be alone rather than communicating with others. And, he is obsessed with certain movies and cartoons, which causes him to insert movie lines into regular conversation with others.

Sean is currently one of the estimated 1.5 million U.S. residents diagnosed with autism. And according to the national Autism Society, a Maryland-based grassroots organization focusing on improving the lives of individuals with the disorder through education, public awareness and advocating for services, the number is increasing daily.

In 2004, the Centers for Disease Control and Prevention (CDC) reported that one in every 166 children born in the U.S. was autistic. Today, the number has increased to one in every 110 births, with a new case diagnosed every 20 minutes.

Some maintain that the increase in autism diagnosis means that the disorder is more prevalent today. Others argue that the increase is due to more knowledge among medical providers, which has led to diagnosis of individuals who in the past were undiagnosed, and public awareness efforts from organizations such as Autism Speaks, and the Autism Society, which has more than 20 chapters in various states across the country, including Illinois.

Regardless of the reason for the increase, autism advocates are diligently working to meet the needs of the growing population.

Understanding autism ASD is a complex group of disorders with a vast array of symptoms and behaviors occurring in various combinations and levels of severity, ranging from mild to disabling. Some may have fairly good verbal skills with very little delay in language, while others are nonverbal. Such variation makes the disorder unique from person to person.

Children with ASD often do not take part in pretend play, and have a hard time initiating social interactions. Many have “meltdowns,” commonly referred to as tantrums, which are usually caused by sensory stimuli,

explained Julie Alderman, training center director of the Springfield regional office of The Autism Program (TAP) of Illinois, which networks with 30 agencies across the state to provide services for those with autism. TAP provides resources, programs, services and support to improve the quality of life for individuals with ASD. It impacts more than 16,000 families each year. In addition to offering services for those diagnosed, TAP also provides training and supports to health care providers and educators to assist Illinois families.

“About 95 percent of autistic children have sensory issues. They are simply overwhelmed by aspects of their environment,” she explained. The meltdowns, added Alderman, often cause families to isolate themselves to avoid being judged by others.

In addition to ASD, autistic children may also have other developmental disabilities, such as mental retardation, seizure disorders and Fragile X Syndrome. Depression, anxiety, attention deficits and sleep and gastrointestinal disorders are also fairly common.

Though autism is most often diagnosed in young children, it is sometimes identified in adulthood.

Living with autism Springfield‘s Rebecca Moore recognized that her son, Jacob, had some developmental delays at an early age. By the time Jacob was four years old he didn‘t talk much, and had frequent meltdowns. “I knew in my gut that something was wrong, but I couldn’t quite put my finger on what the problem was,” said Moore.

Jacob’s pre-kindergarten teacher was the first to tell Moore that her son appeared to have some characteristics of autism, explaining that Jacob isolated himself, had difficulty following simple directions and would only use one particular color during coloring assignments. Several years and examinations passed before an extensive evaluation by a behavioral specialist revealed that Jacob is a high-functioning autistic.

Since his diagnosis, Jacob, who is now 11, has had speech and occupational therapy sessions at school several times each month for about five years. He also receives 30 hours of speech and 30 hours of occupational therapy paid by his father’s insurance.

Jacob has also benefitted from therapeutic horseback riding and the United Cerebral Palsy summer day camp for autistic children and social skills classes at TAP.

Today, Jacob is in the sixth grade and is reading and writing at a first-grade level. Moore: “By the time Jacob gets through high school, if he is at a fifth or sixth grade level, which is the stage that public signs, menus, newspapers, and phonebooks are geared, then my husband and I will have done our job.”

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