|
Mary’s neighbors in
her upscale community are slowly figuring out that something is not quite right
with Stevie, even though her beautiful child looks perfectly normal. The doctors
have said that Mary’s son has Autistic Disorder because he has many
autistic-like behaviors. But Mary knows what is wrong with her son. Stevie
has Alcohol-Related Neurodevelopmental Disorder because of in-utero
exposure to alcohol.
Mary is not poor and uneducated In fact, she is typical of the women whose
babies are increasingly being born with alcohol-related problems —higher income,
college educated, career women who are moderate social drinkers.
What is
Alcohol-Related Developmental Disorder (ARND)?
ARND is a spectrum of disorders that range from severe to mild problems
caused by in-utero exposure to alcohol. 1/100 babies in the U.S. are born with
ARND. At the severe end of the spectrum, children born with ARND display severe
physical and/or behavioral and emotional problems. At the ‘mild’ end of the ARND
spectrum, children can have problems such as ADHD.
What is fetal alcohol syndrome (FAS)?
FAS is 10 percent of the spectrum of disorders referred to as ARND. Children
born with FAS have (with varying degrees) tell-tale facial characteristics:
small head, thin upper lip, a smooth-elongated philtrum (no groove
present), small eye slits.
Why the connection with autism?
Like autism, children with ARND can have trouble understanding what other
people think and feel; difficulty playing with other children; low empathy with
others; inability to understand the ‘give and take’ in language; inability to
comprehend body language and facial expressions or tone of voice; problems with
spatial orientation; overall cognition. Children with either disorder can also
be greatly troubled — sometimes even pained — by touch, sounds, smells or sights
that seem normal to others. They also display unusual responses to changes in
routines, aggressive or self-injurious behavior, difficulty expressing
themselves with words, and odd behaviors. In ARND, the odd behaviors may add up
to a ‘diagnosis’ of autism.
Mary and Stevie’s Story
Mary did not know that she was pregnant until about the sixth week, so most
nights she continued to enjoy a glass of red wine with dinner. 50 percent of
women during their childbearing years do not know they are pregnant during the
first six weeks. Her OB/GYN told her, “Only pregnant women who are
alcoholics have babies with Fetal Alcohol Syndrome”. Mary researched FAS on the
internet. To her horror, she discovered that even moderate drinking of alcohol
can cause Alcohol-Related Neurodevelopmental Disorder (ARND). She and her
husband spent 7+ agonizing months to see if their baby was going to going to be
born normal. He wasn’t. Because Stevie displayed so many characteristics of
autism and the doctors did not understand ARND, he was diagnosed with Autistic
Disorder.
Stevie’s parents realized that since the medical community could not help
them, they had to become FAS/ARND experts to save their child from the grim
outcomes that usually occur without early intervention. They developed many
strategies to help Stevie succeed. They also understood that children with FAS/ARND
are unable to adapt to their environment. Stevie, for example, had anxiety
attacks when he saw doctors because he associated them with ‘needles’.
Solution: Mary asked all his doctors and nurses to remove their white jackets.
On another occasion, a doctor unsuccessfully attempted to get a throat
sample from Stevie to test for strep throat. Mary suggested, “Why don’t you
show him how to do his own throat sample?” Within seconds, Stevie handed the
doctor a perfect culture on the swab of the stick. After that, the doctor’s
staff ‘changed the environment’ and their strategies every time they saw Stevie.
What are some of the problems associated with FAS and the more
severe cases of ARND?
Sensitivity to food texture; sleeping; making and keeping friends;
difficulties determining body language and expressions; easily frustrated/
tantrums and rages; difficulty understanding cause and effect; victimization;
mood swings; poor judgment; lying and stealing; trouble with the law; handling
money; substance abuse; difficulty obtaining or keeping jobs; unintended
pregnancies; poor memory; difficulty planning and organizing; poor coordination.
Many of these problems are associated with alcohol- related disorders, it’s
interesting to note; alcohol randomly damages many systems in the brain and/or
body.
What are the consequences of having this ‘hidden disability’ without
early intervention?
People with FAS/ARND can ‘talk-the-talk’, but they can’t ‘walk-the-walk’.
Regardless of socio-economic status, without early intervention, these
individuals frequently end up as recidivist clients in prisons and mental health
facilities, jobless, or homeless.
Why is a proper and early diagnosis of FAS/ARND important?
With early diagnosis of FAS/ARND, the outcomes of people who have FAS/ARND can
be significantly improved with skillful parenting, a stable and structured home
environment, and appropriate intervention. Once parents realize that their
children have permanent brain damage and that the problem is can’t vs. won’t, it
helps the parents to stop blaming themselves for ‘poor parenting’ and to begin
to search for appropriate interventions that work.
If FAS/ARND is so widespread in the U.S., why is the public so
unaware of it?
Public understanding of prenatal alcohol exposure is limited in the United
States. Not everyone knows that “no amount of alcohol has been found to be safe
to the unborn child.”
How is Steve doing today?
Steve is now 30 years old. Finally, he has been ‘diagnosed’ with ARND. Like
so many individuals with FAS/ARND, he has difficulty keeping jobs. Steve
receives S.S.I under the diagnosis of ADHD because there is no ‘code’ for FAS or
ARND. By society’s standards, Steve is not a success.
But in the world of FAS/ARND, Steve is a success story. He has good social
skills and is much loved by his many friends. A wonderful young woman came into
his life four years ago and they live together. So far, he has avoided any
secondary disabilities.
For more information
• The Fetal Alcohol Syndrome Information Line can be reached at (718) 279-1173.
SUSAN ROSE is president of The Fetal Alcohol Syndrome Support Network of New
York City and Long Island (FASSN, Inc.), which is based in Flushing,
Queens. They can be reached at (718) 279-1173. FASSN is a member of the New York
State FAS Task Force. Susan Rose can also be reached via email: smrose49@aol.com.
|
