September ninth was international Fetal Alcohol Spectrum Disorders (FASD) Awareness Day. We have been using this as an international day of awareness since 1999. The first year we focused on ringing bells to commemorate the day. We tried to get the local news media to feature news articles on the disability. Over the years, we have had a number of activities to draw attention to the disability. One year Christine Gregoire the governor of Washington State filmed a public service announcement on the dangers of drinking while pregnant.
The media has changed over the past thirteen years. This year many participants chose to post to Facebook or Twitter. I posted to both places and started to read through the posts from other advocates as horror swept over me. The messages focused on the lifelong nature of the disability saying, “People with Fetal Alcohol Spectrum Disorders may need lifelong supports in order to work and maintain relationships.” I had to wonder, “What are these people thinking?” No. NO. NO! That is not the norm for individuals with Fetal Alcohol Spectrum Disorders.
Perhaps I have been in the field longer than most of the other advocates. Perhaps they have not read the long-term studies. Perhaps they are living in fantasyland. People with Fetal Alcohol Spectrum Disorders do not have the rosy outcomes the above statement indicates. I suspect that many advocates hope for the best for the people they love. Certainly, I know some individuals with FASD who are able to hold down a job and maintain relationships, sort of. Dr. Ann Streisguth’s long-term studies indicated that some people with the disorder might be able to hold down a job, or maintain family relationships. She did not find people in her caseload who were doing both. It is theoretically possible.
The far more common outcome for people with FASD is not so successful. Most of the young people I met twenty years ago are bumping along with a great deal of support. Some are in assisted living, which works, sort of. Some have a great deal of difficulty with drugs and alcohol. Some are still in prison. Some live in the community with constant support from aging parents and the government. Most receive Social Security Disability payments. Some receive Section 8 housing. Most receive food stamps. The government financial support is in addition to being in constant contact with a caregiver who serves as an external brain.
What is it about this disability that causes it to be so devastating? The answer to that question lies in the nature of the brain damage caused by prenatal exposure to alcohol. Humans have a small structure in their brains, the corpus callosum, that serves as the main right to left pathway for brain activity. It connects facts with meaning. Together with parts of the brain stem, it allows us to learn from cause and effect. Both of these structures are vulnerable to prenatal exposure to alcohol. Dr. Ed Riley at the Univ. of California at San Diego was the first to find the characteristic brain damage associated with prenatal exposure to alcohol. Dr. Streisguth replicated his study.
This characteristic pattern of brain damage produces some predictable behavior problems. Individuals with FASD cannot learn from their mistakes. They cannot connect rules to behavior. They just never develop adult level judgment and reasoning. Most individuals with FASD possess the sense for safety of a three year-old. Of course they have adult bodies and people expect them to learn adult responsibility, which is just not going to happen. With our foster daughter the three-year-old judgment is a life threatening disability. She absolutely cannot keep herself save around the general public. She projects vulnerability. Yes, she has the intellectual capability of working. She is tired of being sexually exploited because she cannot repel predatory men. She stays home and lives on the pitiful income the government provides.
There is another aspect of this disability that is very very difficult for people to grasp. Perhaps some day I will find the magic words to express this better. Most of the people diagnosed with FASD live life on the margins, receiving public assistance if they are lucky. Many get free housing and food in prison. The state pays and pays and pays through the criminal justice and welfare systems for this disability. The individuals who have the disability pay and pay through heartbreak, abuse, poverty, loneliness and failure for their entire lives. The industry that produced the product that causes the damage makes wonderful profits. The liquor industry fought warning labels on their products. They fight taxes to cover the cost of the damage their product causes. They reap huge profits without consequences. Perhaps those with FASD are right actions do not produce consequences—at least not for the liquor industry. They did for the tobacco industry. They did for the paint industry. They do for anybody else who makes a product that causes damage when used in a legal and socially accepted manner. After many years as an advocate in this field, I am tired of the heartbreak from watching the devastation caused by prenatal exposure to alcohol. I am sick of the lack of appropriate response from our government and justice communities.