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: [email protected]