Conversation with a parent points to societal problem

Sunday, April 25, 2004

This series began in the comfortable living room of a Jackson home with a reporter asking a mother and father how education reform had affected their autistic son.

The story grew as the parents told a sunshiny tale of their son who one miraculous day in the back seat of their van awoke from two years of silence and became a fairly typical fourth-grader.

But the story turned into springtime thunderheads as black-and-white information turned gray, as physicians, researchers and motivated parents of autistic children accused high-ranking U.S. health officials of skewing vaccine studies that suggest a link between childhood immunizations and autism.

The mainstream medical community, including national health organizations, refute those claims. The theory is based on incomplete studies and bad science, they say. But the medical field offers few other explanations for a sharp increase in autism cases other than better methods of diagnosis.

Whatever the cause, the rate of autism is skyrocketing and more parents are dealing with autism than ever before.

Autism is an incredibly frustrating disorder for the 1.5 million families affected by it. First documented in 1943, autism works like a short-circuit to the brain.

Children can hear but can't respond. They hate foods they once loved. They obsessively stack blocks. They flap their hands. They love to hug or they hate physical contact. They misbehave, sometimes violently, presumably because they are maddened by their inability to communicate.

Parents of these children face a constant battle to find help for a disorder still largely misunderstood.

Perhaps the most important piece of information about autism right now is this: In the late 1980s, the ratio of autistic children was about one in 2,500. Today, according to the Centers for Disease Control, it's as high as one in 166.

Two Southeast Missourian reporters, Callie Clark and Bob Miller, spent more than a month visiting with 16 families and examining the local, state and national issues surrounding autism. Over four days we'll bring you stories about controversies that surround the disorder, parents' struggles to find services and children's triumphs that make the heartache worthwhile.

We hope these stories will provide a glimpse into the autistic world and the challenges this disorder poses for society.


SPECTRUM DISORDERS

Autism is often referred to as a spectrum disorder because its symptoms and characteristics can present themselves in a wide variety of combinations, from mild to severe. The following is a list of characteristics. PERVASIVE DEVELOPMENTAL

DISORDERS

Term used by the American Psychiatric Association to identify the five autistic spectrum disorders, all of which are characterized by:

Impaired social interaction

Lack on imaginative play

Impaired communication

Repetitive activities

Limited range of interestsAUTISM

Abnormal rate of physical, social and language development

Abnormal response to stimuli such as sight, hearing, taste, touch

Language and speech are absent or delayed

Relate to people, objects and events in abnormal waysRETT'S DISORDER

Diagnosed mostly among girls

Develop normally until between 6 and 18 months of age

Repetitive activities such as hand washing or hand wringingCHILDHOOD DISINTEGRATIVE

DISORDER

Very rare

Develop normally until at least age 2

Regress in areas such as bladder and bowel control, ability to move and social/language skillsASPERGER'S SYNDROME

The mildest and highest functioning form of pervasive developmental disorder

Often diagnosed with attention deficit hyperactivity disorder or emotional disturbances

Have problems with social language, but vocabulary and grammar not impaired

Have normal to very high IQs

Low self-esteem/lack social skillsPERVASIVE DEVELOPMENTAL DISORDER -- NOT OTHERWISE

SPECIFIED

Similar to autism symptoms, such as avoiding eye contact and indifference to affection

Social and speech impairments

Seldom gesture

Giggle/scream for no obvious reason

Resistant to change, compulsive behaviors

SOURCES: Missouri Families For Effective Autism Treatment; Missouri Developmental Disabilities Resource Center

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