The prevalence of FASD

FASD Message

The prevalence of FASD

The prevalence of FASD is far higher than what is reported. It is a spectrum disorder; therefore, there is a very wide range in how it affects the person. For some it seems obvious that they are affected because of the number of characteristics common to this disability that the person has. For others, it is much more subtle. You might well think, “well they don’t have it, “ yet they are affected.

Any time I see a child or an adult with unusual or unexplainable behavioral or emotional problems, or someone deeply struggling, I ask the question, “Are these because of an organic, emotional or traumatic problem.” I also ask the same question when I see a person with multiple diagnoses.1

I have heard that 50% of women who are of childbearing age drink, that 50% of pregnancies are unplanned. That would make a potential 25% of births affected. In some communities there is a much higher percentage of women of childbearing age who drink. With that said, we need to understand it is not a certain group’s problem. It is not a poor person’s problem, a Native or other minorities’ group problem, a certain cultural group problem, but it is a problem that affects everyone across the board. Here in Minnesota, MOFAS  (Minnesota Organization on Fetal Alcohol Syndrome) says that the group that produces the most babies born with FASD are well educated, professional, women who earn $50,000 or more per year. Some think this is due to acceptable social drinking.

FASD is greatly under diagnosed for several reasons:

  • not enough diagnostic capacity
  • lack of reliable proof that the mother was drinking
  • adult diagnostics can be even harder to get
  • no one suspected it or even thought it was a possibility
  • it should be suspected when we see the dreaded percentages
    • 90% have other mental health diagnoses
    • 80% cannot keep a job
    • 70% will be locked up for alcohol and drug rehab (they are genetically predisposed), mental health reasons, or number 1 for crime. Their largest crime is their vulnerability–brain shift–impulsivity–not learning from their mistakes–who the chose for friends–part-time conscience–confusion–always seeming to be in trouble and their lack of ability to stay out of jail.
    • 60% will have trouble finishing school
    • over 50% will do things sexually which could get them into legal trouble
  • it is a socially unacceptable diagnosis

Getting a diagnosis can help. As a young man said after receiving a diagnosis, “It’s heavy, but I’m relieved, I have just always thought I was a bad person.” Fetal Alcohol is a reason not an excuse. We must go beyond a diagnosis. The following have been some of the steps in our journey with Fetal Alcohol:

Early Days

  • through seminars we learned enough about it to suspect it was a problem for some of our children
  • we started getting our children evaluated
  • this helped, because we started to understand that they had organic brain damage and that was the reason for their behaviors that were not corrected by normal parenting techniques
  • we receive services based on their behaviors, developmental delays, and their diagnosis
  • we started learning about fetal alcohol (what causes it, statistics, how to prevent it, and as one teacher said, “There is no silver bullet,” meaning there is no pill, no therapy, and no special parenting technique that will heal them.
  • we started learning parenting techniques (some of which I now disagree with)

Next Phase

  • started talking to our children about Fetal Alcohol
  • started teaching our children about Fetal Alcohol, just as you would teach a person with diabetes about their disease
  • started developing parenting techniques specific to Fetal Alcohol (we were realizing that normal parenting techniques usually did not work)
  • started experimenting with diet

After That Came

  • developing more parenting techniques
  • the desire to not only survive but to thrive in raising children and adults with Fetal Alcohol
  • realizing we have to get beyond blaming the birth mother
  • teaching forgiveness– to forgive everyone and that everyone needs to accept forgiveness
  • teaching them at a new level about Fetal Alcohol
  • creating a program for helping the brain develop
    • wheel to success, which is broken into 5 parts
    • on the wheel with equal weight are the following 4 areas
      • the Body–nutrition, exercise,  and hygiene
      • Relationships–friends, relatives, recreation, and relationship parenting
      • Executive Functioning Skills–goes way beyond how one organizes their thinking and how they organize their day. It has to do with impulsivity, abstract thinking, controlling one’s behaviors and emotions, and much more.
      • Academics–both what we think of as traditional education (maybe done a little differently) and life skills.
      • Values–sitting over the top of the wheel is an arc which is labled Values represents laws, manners, purpose in life, faith, forgiveness, accepting help, friends, alcohol and drugs, sexuality, finances, and much more
    • The Radical Approach – a program putting the wheel into practice, for them

What Comes Next

Revamping the diagnostic process

  • doing more of the above to especially include
    • brain development
    • relationship parenting
    • radical approach (this really matters)
    • recognizing their disability and accepting help
  • a much deeper understanding of the disability and the prevalence of it
  • realizing a small percentage of individuals affected by prenatal exposure will get a diagnosis
  • as a society, realizing the effects of prenatal exposure
  • working on strategies to help individuals both diagnosed and undiagnosed to deal with the secondary disabilities–an important part of this is people recognizing they have a problem, for them to stop blaming others or life for their problem, and for them to accept both the diagnosis and help.
  • honest conversation about prenatal exposure and the effects it is having on our society
  • stop blaming and shaming the birth mother who gave their fetus prenatal exposure to alcohol, but instead work hard to stop the next generation from being affected
  • stop blaming and shaming the individuals who are having trouble (both diagnosed and undiagnosed), but instead working to help them
  • a realization that sometimes it is not prenatal exposure but another problem
  • teaching young girls the importance of their lifestyle for the next generation
    • not only to not drink but not hanging out with people who do
    • having purpose in life
  • teaching about and having incredible prenatal care
  • having the professional community to truly understand prenatal exposure and to work on real-life hands-on solutions.
  • having homes, residential facilities, service providers, and even individuals with prenatal exposure doing as many of the following as possible, these are strategies to help individuals with emotional, behavioral, or addiction problem:
    • Protection – which normally means more supervision. 2
  • Structure – this really helps, keeping them busy.
  • Redirecting.
  • Relationship parenting techniques.
  • Forgiveness is a must.
  • Having purpose in life beyond their self.
  • Being connected with healthy family or friends, having someone that they can trust who is good for them.
  • Having a mentor.
  • Freedom from being bullied and not being allowed to bully.
  • Realizing that they have a problem, being able to admit it, and asking for help.
  • Accepting help and structure.
  • Learning about their disability, plus having those that help them learn also. To help them understand about there vulnerability.
  • Understanding the brain shift and part-time conscience.
  • Understanding the developmental growth spurt and brain health.
  • A healthy diet and exercise can be extremely beneficial. At times a person can have emotional or behavioral problems because of food allergies. I have seen brain improvements because of exercise.
    • Have a healthy diet, exercise, and do the radical approach to help promote both.
    • Getting away from sugar
  • Realizing that at times nothing works.
  • There are some counseling techniques that can be helpful at times, but when the brain shift occurs they can be useless.
  • Homes and residential treatment programs which focus on most of the above items.
  • We have to get beyond blaming the birth mother; instead we need to give her supports.
  • We need to try to prevent future births of children with fetal alcohol.
  • In conclusion I’d like to say if all the above really happens it would be wonderful. But, another change that would be even more wonderful would be a change in people’s hearts. For us as parents, professionals and the general public to stop judging, blaming, shaming, and treating individuals who were prenatally exposed. Instead we need to have compassion, understanding, and support for those who have been prenatally exposed, both diagnosed and undiagnosed. We need to understand that they are not our enemy, but that they are a victim. We need to consider their quality of life. We also need to consider how to keep them safe from the society and also how to keep the society safe from some of them.

So let’s take our gifts of love, patients, forgiveness, knowledge, and experience to help us think outside of the box, and help those prenatally exposed and their caregivers.

Thank you, John

 

1 Just as person can have a diagnosis of diabetes and/or heart trouble one can have an accurate FASD diagnoses along with other diagnoses also. Fetal Alcohol came first. Some other disabilities that can cause

Fetal Alcohol type characteristics: childhood traumas, RAD, father’s drinking, dysfunctional families, emotional trauma, premature birth, genetics, alcohol and drug use, mental health issues, ADHD, Autism, traumatic brain injury and many other medical and emotional problems.

I know an adopted boy who did not have Fetal Alcohol but his older sister was very affected. She was his main playmate and teacher about life and how to act. He certainly appeared to have it.

2 Protection in our home usually means more supervision or going to the table which is in the hub of our home. While at the table they can do school or play. In order to leave the table they need to have permission. Usually in order to get permission they will have to make a plan of what they want to do next. Another strategy we use is they have to be our shadow. It could be mom’s, dad’s or another person who is in authority over them. Meaning they have to follow them around, sit next to them, or be within their site.

To help you understand I’ve included a link to a chart of overlapping characteristics of several different diagnoses.

 

From MOFAS.org Overlapping Characteristics