The Arc Reacts to New Book on Pregnancy Risks, Including Drinking Alcohol: “Why Risk It?”

The news media is paying attention to a soon-to-be released book, “Expecting Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know,” by Emily Oster, an associate professor of economics at the Booth School of Business at the University of Chicago.  As the leading organization supporting people with Fetal Alcohol Spectrum Disorder (FASD), The Arc is pushing back on the claims put forward in this book that could lead women to believe that light drinking during pregnancy is statistically safe.  Oster is not a medical professional, and the medical community has a clear position on this issue – there is no safe amount of alcohol that can be consumed while pregnant.

“Why risk it? That’s the question we should be encouraging women to ask themselves when they consider drinking alcohol while pregnant.  According to the U.S. Surgeon General, the nation’s top doctor, there is no absolute safe amount of alcohol that a woman can drink during pregnancy without risk of harming her unborn baby.  FASD is 100% preventable, yet books like this one give the irresponsible impression that the odds of a drink here or there affecting your child aren’t high enough for women to choose to abstain from drinking alcohol while pregnant,” said Peter Berns, CEO of The Arc.

What is FASD?

FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications.  It is identified by abnormal facial features, central nervous system problems and slowness of growth, and occurs when pregnant women drink alcohol and pass the alcohol along to their unborn babies through the blood stream.  FASD can cause physical and mental disabilities of varying levels of severity, including intellectual disability.  It is often a “hidden disability” that is not easily recognizable, making it difficult to provide affected individuals and their families the supports they desperately need.

What are other disorders linked to drinking while pregnant?

FASD covers other terms such as: FAS (Fetal Alcohol Syndrome), ARND (Alcohol-Related Neurodevelopmental Disorder), ARBD (Alcohol-Related Birth Defects) and FAE (Fetal Alcohol Effects). FAS is the most identifiable and serious disability under the FASD umbrella, although it only accounts for approximately 25% of all alcohol-related effects. FAE is a term often used to describe someone whose condition does not meet the full criteria for an FAS diagnosis.

The data affirms the national recommendation to not drink while pregnant

The CDC doesn’t know exactly how many people are affected, however their studies have shown that between 0.2 to 2.0 cases of FAS occur for every 1,000 live births in the U.S. (this statistic focuses on FAS only, not FASD).

When the number of people with FASD are included in that data, the National Organization on Fetal Alcohol Syndrome states that approximately one in 100 children are affected by FAS or FASD.  This is based on a study from the University of Washington that refer to this as a conservative rate, affirming the belief of many health professionals that fetal alcohol exposure is a serious problem in the United States.

According to the federal Substance Abuse and Mental Health Administration, for one individual with FAS, the most severe form of FASD, the lifetime cost of care is estimated at $2 million.  For our nation as a whole, the cost may be as high as $6 billion each year.

While there is no safe time period in a pregnancy to drink, recent research shows that between weeks six and twelve of a pregnancy, a baby is particularly susceptible to harm from drinking alcohol, showing an increase in certain facial features of FAS, in addition to lower birth weight and length.

“What you don’t know can, in fact, hurt you and your baby – for a lifetime.  There is no safe amount you can drink and still protect your child’s health, and dissecting data to prove otherwise will only increase the number of kids affected.  This is a societal problem that is within our power to tackle, as long as we carefully listen to all the facts,” said Berns.

My Trip to the White House as a Champion for Change

Champions of Change in Washington, DC

Champions of Change at the Embassy of Tribal Nations in Washington, D.C.

By Morgan Fawcett, Self Advocate

I am Lingít, from the Wolf Moiety and Kaagwaantaan from Kook Hít, the Box House. My Lingít name is Sheens and my English name is Morgan Fawcett. I am 19 years old and I live with Fetal Alcohol Spectrum Disorder (FASD). On December 1st, eleven indigenous youth were recognized as Champions of Change at an event at the White House for their work in each of their respective communities. The Champions came from different backgrounds, hometowns, Tribal Nations, and fought for their communities in different ways but they each worked toward the same goal; change, a small word with a huge connotation.  I would like to recognize 10 of the Champions before continuing:

Teressa Baldwin: Native Village of Kiana, LeVon Thomas: Navajo, Madeline Sayet: Mohegan, Desiree Vea: Native Hawaiian, Iko’tsimiskimaki “Ekoo” Beck: Blackfeet, Emmet Yepa: Jemez Pueblo, Lorna Her Many Horses: Rosebud, Tiffany Calabaza: Kewa (Santo Domingo Pueblo), Cassandra Steele: Pomo, and Dallas Duplessis: Alaskan Native.

I was selected as one of the Champions of Change for my family’s efforts to raise awareness and understanding of FASD.  I’m a member of the “Self-Advocates with FASD in Action” network, run by The Arc and the Substance Abuse and Mental Health Services Administration FASD Center for Excellence.  I and the other Champions were brought to Washington, D.C. to be honored for our work and to gain a better understanding of the many ways of leadership. December 1st, the Champions of Change were taken to the Eisenhower Executive Office Building and organized into discussion panels to present our causes to Tribal Leaders and U.S. Government Officials alike. After the panels were completed, we were taken to the West Wing of the White House for a Twitter Question & Answer session. The day was wrapped up with a bus tour of D.C. and a reception, and the events ended after 8 in the evening.

December 2nd, however, was the big day. This day started early in the morning with a trip to the Department of the Interior, to participate in the opening and closing session of the Tribal Leaders Conference put on by the White House. Not only did we get to listen to current legislation and laws that positively affect Tribal Nations and have a basic overview of discussions between the U.S. Government and Tribal Nations, the Champions were able to meet, shake the hand of or hug and take a picture with The President of the United States. Waiting was the hardest part; time seemed to come to a standstill, as time passed, our anticipation grew. But the in the end it was worth the wait. To add to the excitement, President Obama mentioned 3 of the 11 champions in his address to the Tribal Leaders.

To sum up this experience in a few short paragraphs is next to impossible, but in closing I have to say this trip was a wonderful opportunity to grow as a youth leader as well as meet other young people that share a common goal. I wish the best of luck to the other Champions in all of their endeavors. I would like to thank everyone who has helped and supported all of us as we fight to bring about change.

We, as indigenous youth, are riding the winds of change, and we are knocking at your door, but who is willing to answer?

Gunalchéesh ax x’éit yee sa.aaxí (thank you for listening),

Morgan Fawcett

Victims with FASD Highlighted in Academic Journal

Journal of Psychiatry & Law

Many people don’t know about FASD (Fetal Alcohol Spectrum Disorder) or how common it is in the U.S. because it often goes undetected or is misdiagnosed. Similarly, most don’t realize that people with disabilities are more likely to be victims of crime compared to those without disabilities. A new, groundbreaking double issue of the Journal of Psychiatry and Law regarding people with FASD in the criminal justice system is bringing these two “underground” worlds of FASD and victimization together to be dissected and studied under one theoretical roof.

As The Arc’s Project and Information Specialist and an expert on these issues, I had the exciting opportunity to contribute to this issue! Speaking to experts in a wide array of victimization, disability and legal fields served to broaden my own perspective of how to best serve this population, and the co-authors I worked with had a similar experience. I am equally thrilled to be attending a press conference in Washington, D.C. on November 17 hosted by the National Organization on Fetal Alcohol Syndrome (NOFAS) to announce the release of this unique special issue. After the press conference NOFAS is coordinating an “FASD & The Law” policy luncheon to prioritize policy recommendation in the justice arena and develop an action plan after which they will videotape interviews with professionals and experts on the topic. Those video interviews will be available soon on the NOFAS website and possibly distributed via The Arc.

Even though a high percentage of incarcerated juveniles and adults have symptoms of FASD, many lawyers, judges and mental health professionals don’t know much about it so it continues to go unrecognized. This special issue of Journal of Psychiatry and Law helps raise awareness of the serious needs of people with FASD, and gives advocates concrete information that helps them serve victims with an FASD more confidently and compassionately.

Training is a critical tool used to educate parents, self-advocates, victim assistance agencies, court personnel and others about serving crime victims with an FASD. As a follow up to the press conference, experts will offer a free training in the Washington, D.C. area to help practitioners know how to look for red flags that identify individuals with Fetal Alcohol Spectrum Disorders (FASD) who are involved in the court system.  It will address why they may have IQ’s above 70 but have low adaptive behavior skills and describe how courts should treat people who have cognitive and neuro-developmental needs, including the importance of knowing how to provide accommodations. If you are interested in learning more about the journal article, press conference or training, please contact me at ldavis@thearc.org.