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Island-based Autism Fund still searching for support

November 24, 2009

Autism is a developmental disability which will usually appear during a child's first three years of life.

But unlike conditions which have specific physical characteristics, autism's effects are neurological, ranging from a person who is completely unable to speak or communicate and is acutely sensitive to touch, to a one who won't make eye contact, will arrange items methodically or will talk in a robotic manner.

For Patrick O'Sullivan, an attorney with more than 30 years of experience, understanding more about the disorder became a personal mission less than a decade ago.

Since 2008, he began championing awareness and support for autism-related programs through a Web site - www.theautismfund.org - raising money to assist families in Lee and Collier counties who have children age 5 and under who have symptoms within the Autism Spectrum and who are unable to afford behavioral therapy.

O'Sullivan was initially introduced to autism through his wife, Laura, a former professor of Psychology at Florida Gulf Coast University.

"She was the mentor for the school's Psych Club, and one day they had a speaker give a lecture about autistic children," he said.

Fact Box

Common characteristics of autism

Insistence on sameness; Resistance to change

Difficulty in expressing needs, using gestures or pointing instead of words

Repeating words or phrases in place of normal, responsive language

Laughing (and/or crying) for no apparent reason; Showing distress for reasons not apparent to others

Preference to being alone; Aloof manner

Tantrums

Difficulty in mixing with others

Not wanting to cuddle or be cuddled

Little or no eye contact

Unresponsive to normal teaching methods

Sustained odd play

Spinning objects

Obsessive attachment to objects

Apparent over-sensitivity or under-sensitivity to pain

No real fears of danger

Noticeable physical over-activity or extreme under-activity

Uneven gross/fine motor skills

Non-responsive to verbal cues; Acts as if deaf, although hearing tests in normal range

SOURCE: www.autism-society.org

The topic piqued his wife's interest immediately and, after doing some initial research on the subject in her spare time, she decided to step down from her teaching position in order to devote herself to studying more about autism.

"When she quit her job, that sort of blew my mind," said O'Sullivan. "But I knew I had to be supportive."

Laura took several online collegiate courses through Penn State University before earning board certification in the State of Florida. Once certified, she opened Children's Autism Treatment Specialists in the San Carlos Park subdivision of Fort Myers, the lone Lee County facility dedicated to providing both classroom and in-home therapy for youngsters afflicted with the developmental disability.

Then, he recalled, an interest in learning more about the disorder stirred within himself.

"We have seen a steady increase over the past few years in parents looking for treatment for their children," he said. "And as diagnostic tools become more precise and the sign and symptoms of autism become better known, the nunbers will continue to increase, here and elswhere. We hope that the information coming from both of these new studies, coupled with the fact that autism is now the most prevalent childhood development disorder, will spur local, state and federal government and health authorities into action to fund more treatment for children with autism."

O'Sullivan explained that although a recent study published by the Centers for Disease Control and Prevention found that about one in every 100 American children will be diagnosed with an autism spectrum disorder - including 1 in 94 boys - very few insurance companies provide coverage to pay for therapy and treatment of autism.

In fact, The Autism Society estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs for autism. This figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation and employment, in addition to related therapeutic services and caregiver costs.

That's when O'Sullivan got the idea to start The Autism Fund.

The Autism Fund, a tax-exempt public charity, was founded last spring. It is managed by Patrick O'Sullivan and run by a Board of Directors well versed in autism issues and experience in education and charitable fundraising. The board includes fellow islander Virginia Fleming, President; Dr. Marcia Greene, Vice-President; Anne Haslem, Secretary; and Eileen Roulston, Treasurer. There are also two at-large members, Dr. Monica Sylvia and Dr. Stephen Brown.

"Much is being done to discover the causes of autism, but meanwhile the children already effected are desperate for treatment and the means to pay for it," O'Sullivan added.

According to O'Sullivan, there are hundreds of needy children ages five and younger in Lee and Collier counties who could benefit from such treatment, but whose families cannot afford it. All evidence points to significant improvements in children on the autism spectrum if they receive behavioral therapy as early as possible. The U.S. Surgeon General recommends behavioral therapy to "increase the ability of the child with autism to acquire language and the ability to learn."

It is this need that The Autism Fund is attempting to address.

However, launching a fund-raising entity on an island already known for its many charitable organizations has been challenging at times.

"The process has been very, very slow," said O'Sullivan, a Sanibel resident since 2003. "We're a new charity, and I know that some people may be reluctant to give money to us rather than another well-established charity, but all of the money we raise will go toward funding treatments. Other charities, like Autism Speaks, gives their money to research. Money we get will help make a difference right away."

All money raised by The Autism Fund pays for autism treatment for children, helping them to develop social, motor and verbal behaviors and reasoning skills using a treatment known as Applied Behavior Analysis (ABA). Many health insurance companies and Medicaid will not cover the cost of this treatment. Therefore, many families cannot benefit from ABA therapy for their children.

That's where O'Sullivan and The Autism Fund hopes to make a difference.

For more information or to make a financial contribution, visit www.theautismfund.org.

 
 

 

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