Fetal Alcohol Spectrum Disorder and Complex Trauma

A couple of weeks ago I attended a day long workshop on Fetal Alcohol Spectrum Disorders (FASD) present by Dr. Susan Adubato Ph.D. and Dr. Mary DeJoseph of the New Jersey Regional FASD Diagnostic Centers. The following will give you a brief summary of what FASD is and then I will discuss how this effects the work we do with survivors who are using alcohol.

From the website http://www.fascenter.samhsa.gov/



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 may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. Each year in the U.S., as many as 40,000 babies are born with an FASD. The cost to the nation for FAS alone is about $6 billion a year.

The term FASD

The term FASD refers to a spectrum of conditions that include fetal alcohol syndrome (FAS), fetal alcohol effects (FAE), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD). Although disorders within the spectrum can be diagnosed, the term FASD itself is not intended for use as a clinical diagnosis.

Fetal Alcohol Syndrome has been an evolving issue. Initially, from the 1950’s until the mid 90’s FAS was the term which applied to those children who were born with certain facial characteristics - thin upper lip with a small philtrum (the midline groove in the upper lip that runs from the top of the lip to the nose), low birth weight, small eye openings, and small head circumference. However, as neuroscience and the ability to study fetal development has advanced, it is now known that the physical characteristics of FAS do not need to be present for a child to be born with FASD. When and how much drinking occurred during fetal development influences what the effects will be.

The most serious symptoms of FASD are the invisible symptoms of neurological damage that results from prenatal exposure to alcohol. These include: attention deficits (with or without hyperactivity, memory deficits, difficulty with abstract concepts (math, time, money), poor problem solving skills, difficulty learning from consequences, poor judgment, immature behavior, poor impulse control. Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs, or sustaining healthy relationships. Without appropriate support services, these individuals have a high risk of developing secondary disabilities such as mental illness, getting into trouble with the law, abusing alcohol and other drugs, and unwanted pregnancies. Children and adults with FAS are also quite vulnerable to physical, sexual and emotional abuse (Teresa Kellerman of the FAS Community Resource Center 2005). This is very similar to the issues faced by persons with a history of complex trauma.

This presents a challenge. FASD is considered to be a birth defect that is organic in nature and needs to be treated differently than you would someone with complex trauma. How are we to know that difference? We more than likely don’t. However, there is the likelihood that we are working with survivors who have FASD in addition to dealing with trauma. Knowing the family history is the only way to know if it is possible and it can only be diagnosed by a doctor who specializes in FASD.

Along with the generational abuse that occurs in families, we can now ascertain that the legacy of growing up in an alcoholic family may include FASD in addition to complex trauma. I have to admit that I find this information a little overwhelming. It explains why there appear to be some survivors who continue to have difficulty problem solving and making changes even when we provide support and empowerment. This may explain why some survivors have difficulty making decisions, processing information, and developing new healthy relationships long after the trauma has ended and they are living in a safe environment and not experiencing triggers or flashback.

I would be interested in hearing how you feel this information plays a part in the work that you do, your response to survivors with complex trauma who grew up in alcoholic families, and how you respond to pregnant women who are using alcohol.

According to the research, there is no safe amount or safe time during a pregnancy for a woman to drink alcohol. Many women have already incurred damage on the fetus even before they know they are pregnant. Does this information change your thinking in regards to choice when it comes to using alcohol, particular for women of childbearing age?

Contact me for more information or do a search for Fetal Alcohol Spectrum Disorder.

Where Does She Belong?

In this post I would like to address some of the comments that I have heard over the years in regards to opening shelter doors to women who have substance abuse and mental health issues.  I have tried not to editorialize in most of my blog posts, however, this post may stretch that boundary.  If you are a staff member or volunteer with a domestic violence program, I invite you to use this article as a way to generate discussion with other staff members.

During the 1990’s I worked with the YWCA in Norfolk, VA to implement the Women and Recovery program to provide shelter and transitional housing to victims of domestic violence who had substance abuse issues.  I also worked with the Virginia domestic violence coalition to provide training and technical assistance to other programs in the state to increase access for women with substance abuse issues.

At that time, many programs were screening women out of shelter based on when they had last had a drink or used drugs.  Some programs had a requirement of 24 hours of abstinence whereas others had a 30 day requirement.  My argument was that many staff in those programs would not be able to access shelter under those restrictions. 

My goal was to educate in regards to the safety needs of victims who were self medicating due to violence in their lives.  People started to realize that a woman was unable to get clean and sober while living with an abuser who was using her substance use as a means to control her and who tightened control if she tried to become sober.  We also understood how some systems of recovery further disempowered women and how much fear, stigma, and shame existed for women who used drugs.

There were staff members who stated their opposition and one executive director said to me “I do not want those type of women in my shelter.”  I responded with “you already do.  They just know that their safety and security is at risk if you find out so they do everything they can to hide it.”  In the same way that victims have had to hide money, keys, clothing and important paperwork from their abuser, victims with a drug or alcohol problem knew they needed to hide their use from shelter staff in order to remain safe.

I have seen shelters become more understanding of the use of alcohol and drugs to self medicate the effects of trauma in women who come into shelter.  Shelter staff are more willing to work with survivors to access recovery programs and provide plans to remain safe and sober.  They understand that without other resources and skills to manage anxiety, fear, and sleeplessness, the woman does not see another choice but to use.

The challenge now is to address the stigma and attitudes in regards to sheltering persons with severe mental illness.  The comments I hear now are – “She doesn’t belong here.  She is mentally ill.”  “Her primary issue is not domestic violence.  She doesn’t belong here.”  “She is scaring the other clients.  She doesn’t belong here.”

Where does a battered women who has a mental illness (that is more than likely a response to trauma)  belong?

The domestic violence movement has consistently seen that violence against women is perpetuated due to systems that fail to respond to the needs of battered women and their children.  The movement not only worked to develop programs that provided safety and shelter to women, but also worked to make changes in the institutions that were created to maintain public safety.  Over the years, the domestic violence movement has made institutional, society, and ideological changes that made it safer for women in their homes and made it safer for her to leave. 

What this means is that the women who used to seek shelter now have resources that provide safety without needing to leave their home or, if they do leave, they are able to live safely elsewhere. 

There are still failures in the systems, but now the systems actually exist and the number of women whose primary issue upon entrance to shelter is domestic violence is fewer.  Domestic violence may be a contributing factor but once safety needs are met, it is no longer the main issue.  The long term effects of trauma, whatever form they take, become the main issue along with housing, financial, and transportation needs. 

Because of the current crisis in the mental health system women have a more difficult time in accessing services to address their mental illness.  Women may also choose not to engage in the mental health system because it has not met her needs, overmedicated her, did not validate her trauma, and possibly re-victimized her or colluded with the abuser. 

So, again I ask – Where does she belong?

If the domestic violence movement has a history of keeping women safe while working to change or partner with systems, then she belongs with us.  In the same way that we have kept battered women safe while we worked with police officers, judges, and social services to develop laws to protect, we are called to protect battered women with mental illness while we work to promote collaboration and changes that can protect her and assist in her recovery from trauma.

By saying she doesn’t belong, we are re-victimizing her.  By recognizing she does belong with us due to the nature of her being a woman who has been abused, our goal becomes changing how we respond to ensure her safety, the safety of others in the program, and the safety of staff?  It takes education and willingness to move outside our comfort levels in order to meet her where she is and find ways to increase her choices.  If we don’t, what other choices does she have?