Fetal Alcohol Spectrum Disorder (FASD)

I received training on FAS/FAE back in 1976. I was told that we were the experts in the country as the information was only brought into the country in around 1973. We were told that there were very few others informed about this condition. No one was making the diagnosis yet that they knew.

The way to avoid FAS/FAE we were told is to not drink alcohol when pregnant! The new term is FASD and it is preventable!

I try to stay informed since that time and my daughter and I facilitate an FASD support group for parents. I drank alcohol when pregnant with my daughter and she was just a year old when I went through the training.

Because of the training, I did not drink or use anything including smoking cigarettes or drinking caffeine when pregnant with my son.

My daughter has an adopted child she is raising that is on the spectrum. She has a diagnosis. Her biological mother drank alcohol with this child and perhaps four other children that were adopted.

More recently looking at quick tips on FASD Caregiver Success, I thought it may be important for others if I shared some of the information. That group is on Facebook, complete with videos, and the quick tips this month are great.

I know that research and medical explanations are helpful too, but I like the quick tips as I already know much of the material from years of keeping up. The videos are not on YouTube and I could not copy and paste them here, so if you are not on Facebook, then I am not sure how you get them.

I will post a list in this article, but the video is better. Jeffrey James Noble is the person giving the information. I know he has written a book, maybe more than one book, and has a support group also for parents.

Here are a few of his quick tips with one each day this month:

1) "You may think your child is immature, but they are displaying dysmaturity, a primary characteristic of FASD. Sometimes it means cutting their age in half. If they are an adult but maybe 11 on the inside (like in the movie Big, with Tom Hanks). How old are your kids, how old are they really?"

2) "Change terminology to move from punishment to support... If we believe willful, intention," it will be punishment, but rather look at symptoms of FASD. No person who wakes up thinks I am going to be an A-hole today. "If something is happening and looked at as a symptom, rather than willful or purposeful... then there is more sympathy than punishment."

"Tantrums are a symptom of the brain of someone whose brain is just not treating them well."

3) Medical community does have a disconnect between what is heard and what is understood. All FASD have brain and central nervous system symptoms. Over 90% of people who have FASD, do not have identified facial features. They do not need a mom's acknowledgment of drinking alcohol, as you may get someone close to that mom who knows if she drank. (Summary of what James Noble said.)

4. Your/My kids are smart, and they are just not applying themselves you or someone else may say. Wrong! FASD individuals know a lot. The problem is executive functioning. What you do with what you know. If you can't access what you know when you need to know it, that is the problem. It is tough to access services too, as often you need a 70 and lower IQ or a diagnosis that is not always possible, due to misunderstanding.

The no follow-through is not that they don't want to meet their goals. They want to meet their goals. It is the follow-through. Help with functioning makes it possible for someone with FASD to then lead with intelligence. Cardinal deficit is executive functioning. (Summary of what James Noble said.)

5. Don't think someone with FASD is more capable without support than they are. Our expectations need management as we want our loved ones to do good, so we push or add more as we think if they can do this or if they have done well for this long, then they can do well now and do more.

Expectations can be premeditated resentments. FASD people have good days and good weeks, and we think if the person can do this well, then why not do this and this and this!! (Summary of what James Noble said.)

6. Frustration = Is it misbehavior or misunderstanding. Slow processing speed, poor working memory, audio processing disorder. Short-term memory is not good. It is common to remember one of 3 things asked to do or 2 things, but not three things. It means slower hearing, taking the words in slower, processing slower, and slower cognition. It takes longer to find the answer and to say the answer.

Many of our FASD kids are people pleasers. They don't want to disappoint. Ask yourself when you are frustrated, is it a misunderstanding? (Summary of what James Noble said.)

Day six in May, tip six!

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Remind yourself behavior is due to brain trauma from the mother drinking alcohol when pregnant. Then consider how mental health challenges are common with FASD. Some of them include mood and anxiety disorders, attention deficit hyperactivity disorder, conduct disorder, and reactive attachment disorder.

There are others also. For co-occurring disorders with FASD, how we treat Mental Health disorders has to be different, as some of the regular treatments do not work. Some of the medications do not work. This is why it is important to know if someone has FASD.

There is more information on all of these subjects. I just wanted to mention some of the issues that parents and caregivers deal with in living and working with a person with FASD.