Woman Fighting to Remove Autism Misconceptions
Article used with permission from the Capital Gazette
By E.B. FURGURSON III, Staff Writer
 Like
many parents, when Veronica Bird Mahaffey discovered
one of her children was autistic she didn't know what
to do -- at first. Then, in the middle of a whirlwind
that seemed to bring Ramsey Mahaffey back from the void,
the Davidsonville woman felt a need to do something
larger than herself, something to help others deal with
the increasingly common malady. So she started the Veronica
Bird Charitable Foundation and Ahead with Autism, a
one-woman campaign to pass on the best information available
to parents, professionals and the public.
"People just don't want to know. They hear the
word autism and only think of the worst," she said."I
am out to help remove that stigma."
And she's using doctors, videos, artists and auctions
to do it.
An award-winning, hourlong video produced by Ms. Mahaffey,
who moved to the United States from Brazil at age 14,
teaches the telltale early signs of autism plus strategies
to manage it.
Nearly 11,000 copies of "The Different Shades
of Autism" have been distributed to parents,
doctors and caregivers. Last month, the video won a
finalist's award at the New York Film Festival. And
now the American Academy of Pediatrics wants to distribute
a version of the tape to its 55,000 members.
The mother of two has been footing the bills for her
efforts. She has resorted to fund-raising methods, like
auctioning her diamond at Sotheby's in New York last
summer for $30,000, and selling paintings by an award-winning
Brazilian artist and friend, Teixeira Mendes.
The costs are considerable. Each tape mailed out costs
$7, not including production and editing. "I could
not sell them. It was more important to get the word
out, and equally important to make it accessible, so
I gave them away." she said. Although the tapes
are mailed with a request for a donation, she has received
few offerings.
Ms. Mahaffey, who lives in Davidsonville with her husband,
Reggie, is now reaching out for local support to finish
editing the tape for the pediatricians and keep her
operation going. "We have letters and requests
from all corners of the globe -- Malaysia, Australia,
Canada -- asking for the tape, but hardly anyone locally,"
she said. "No one knows I'm here. "Maybe some
local company like ARINC or (USinternetworking) might
step in. We really need the support from the community,
it will make us so much stronger."
The video has been praised by those on the front lines
of the battle with autism -- parents, doctors and teachers.
"It tells you about autism from the beginning,
from early identification to treatment," said Sandy
D'Erasmo of Arnold, whose child has a form of autism.
"But the best thing about it is it gives you hope,
stressing how well early intervention can work."Ramsey's
recovery
For years experts have found that intense one-on-one
training can help autistic children learn to cope with
the language and social interaction problems they endure.
Autism is a wide spectrum of related conditions whose
common theme is an impairment in social skills, acute
sensitivity to environmental stimulation and some impairment
of communication skills.
Trained pediatricians now can see the signs of autism
in children as young as 18 months, not the 3 or 4 years
previously thought to be the age of onset.
That's what happened for Ramsey.
His early diagnosis of regressive autism at age 2 was
immediately followed by one-on-one training at the Johns
Hopkins University Kennedy Krieger Institute, then an
equally intensive program at the Gateway School.
But an unexpected event helped to bring him back, according
to Ms. Mahaffey. In fact, it was an accident. Ramsey,
now 6, had received the steroid prednisone in an antibiotic
regimen. Ms. Mahaffey noted a change in his demeanor.
Ramsey had gone from an early vocabulary of 60 words
to only one; then he seemed to come back. What followed
was a three-month regimen of the drug, which aided his
recovery.
The prednisone brought Ms. Mahaffey in contact with
Dr. Stephen H. Mott, director of child neurology and
medicine in the Child Development Center at Georgetown
University Hospital.
"Veronica is working so hard at this," said
Dr. Mott, now executive director of the Veronica Bird
Foundation. "She is the driving force. She comes
at it from the heart and leads the way.
"I just try to guide things from the scientific
point of view."
The secondary goal for the foundation is to secure
funding for a full controlled prednisone study.
As of now, Dr. Mott has run a trial with amazing success.
"In general the response rate is 70 percent,"
he said.
But there is also is about a 50 percent regression
rate. The depth of the regression and scope of success
depend on how severely the child has been affected by
autism. Because some estimates put the occurrence of
autism at one child per 500, the American Academy of
Pediatricians would like to distribute a short version
of the video to its members. Ms. Mahaffey hopes her
foundation will get some income from the deal, once
work on the 30-minute version is completed.
The video has opened some doors. After sending it to
the former first lady, Sen. Hillary Rodham Clinton,
D- New York, Ms. Mahaffey received a personal note saying
Mrs. Clinton had watched it and passed it on to the
surgeon general.
Soon thereafter she and Dr. Mott were invited to the
surgeon general's first conference on childhood mental
illness last summer.
The autism issue took a giant step forward today when
leaders on Capitol Hill announced the formation of the
Congressional Autism Caucus, a core group of legislators
who will push autism issues.
Ms. Mahaffey was there, tapes in hand.
Tax-deductible donations can be sent to the Veronica
Bird Charitable Foundation, P.O. Box 599, Riva, MD 21140.
For more information, go to www.aheadwithautism.com
, e-mail RAMSWAY@aol.com , or call 410-956-5882.
Published February 13, 2001, The Capital, Annapolis,
Md.
Copyright © 2001 The Capital, Annapolis, Md.
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