Saturday, April 24, 2010

A time to highlight accomplishments of those dealing and living with autism

Kim Dabney
Special to the Progress
April 24, 2010

CLAREMORE — What do labels such as “American Indian,” “Jewish,” “Jehovah’s Witness,” “disabled” and “Polish” have in common? They describe wonderful groups of people denoting their faith, culture, condition or heritage. These labels also subjected millions to persecution and death.

For the past 30 years, the United States recognizes April as National Autism Awareness month.

A time to highlight the accomplishments made in healing, dealing, and living with autism.

As the headlines roll in this month it appears we are slipping back to fear of the label and the denial of common rights or dignity to those who must bear it.

Recently, in Oklahoma City, a hospital refused admission to Stephen Puckett, a 28 year-old with autism suffering severe seizures. The reason; he is an adult with autism.

These same hospitals take drug addicts, murderers, rapists, mentally ill, black, white, Hispanic, male and female but not autistic adults.

As a parent of an autistic child the message that several hospitals state as ‘policy’ chills me to the bone. Our son Drew has autism and is only eight years away from reaching the legal age of adulthood. How will this ‘policy’ affect him and others like him?

Drew regressed into autism at age 16 months, leaving him in “label limbo” with pediatricians who shrug their shoulders about how to help him and education systems that do not want to teach him.

Health insurance companies that my husband and I paid premiums into for years do not cover Drew’s health and well-being if it is in connection to his autism. Life insurance companies will not write a child rider for him. There is no escaping the label. These acts of exclusion happen almost everywhere.

There are a few standout exceptions: notably, Roosa Elementary school in Claremore.

The teachers, therapists and staff do not measure Drew by his autism label. They see him as a smart, loving little boy who likes to swing, play with rocks and mud, go to the zoo and do math.

His teachers and therapists marvel at how well he is doing. They push him hard to learn how to read, write and count.

They think he has a future and is worthy of an education. They are doing something remarkable in that they have refused to judge him by the label. They see a growing little boy who wants to learn, have friends and play like other children.

What is equally significant are the other children at Roosa, the typically developing ‘normal’ children, his peer group. These children accept Drew, no qualms or hesitations. They quickly learn how to communicate with Drew, who is non-verbal.

They play with Drew and he loves it. Drew’s autism label does not get in the way. What resourceful adults these Roosa Elementary children will turn out to be.

They will be able to work with all type of people, never seeing the differences as the person, but the person behind it all. They will be first-rate communicators, good neighbors, incredible in the work force, already able to get along regardless of the disparity of a less than desired label.

Perhaps that explains what happened to Stephen. His label of autism met up with folks in authority who do not ‘do’ autism.

Possibly, if they had grown up with children in their classroom and playgrounds and learned to see the person, not the label, Stephen would have received care for his seizure and compassion that his autism makes it harder on him to understand what is going on.

Maybe the “universal government health care” that our elected officials are forcing its way to reality will put an end to situations like those that Stephen went through.

Maybe not. England is a civilized country similar to America that has had ‘free health care” since 1948. Does their system treat the person or the label?

A short while ago in England, Mr. and Mrs. Roberts’ 20 year old son, Harry Horne Roberts, was living in a group home.

Harry had autism. His devoted and caring parents took care of him at home until he was an adult. At age 18, they had safety concerns for Harry and moved him to an assisted living facility where they visited him four or five days a week.

A serious medical decision, made without Mr. or Mrs. Roberts’ knowledge or consent, to put the young man on the drug Chlorpromazine ended Harry’s life.

This dangerous anti-psychotic drug can cause brain damage, sudden death, heart failure and is not a proven or approved treatment for autism. Harry died in his sleep this past December. He was very healthy, active but not psychotic. He was simply autistic.

As a parent of a child with autism, Harry’s suspicious death and Stephen’s denial of medical care present horrifying questions. What is going to happen to my child when he is no longer legally a minor?

Parents of children with any disability that continues to affect them as they mature to adults are faced with the gruesome reality that care for their adult children may be denied or taken over by the state. After years of sacrifice, love, devotion, care, and advocating, we may have our adult child deemed unworthy of medical care or even worse, legally killed with ghastly chemical cocktails prescribed by the state.

Autism Awareness month is almost over and the label of autism is still misunderstood. If you know someone with autism or who has an autistic child, take a moment to see the real person. They may have some quirky characteristics. Do not let that distract you from seeing the real live human being that longs to be in your eyes, more than a lousy label.

n Kim Dabney is the parent of a son with autism.

click here to read the article.

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