"Not working up to capacity"? Or--dealing with prenatal alcohol damage.

Since I retired a year ago to work on Fetal Alcohol Spectrum Disorders, I've been a little surprised at the reactions of my friends here in the heart of wine country when I raise the issue. Many dismiss it altogether as not a "thing"; others hotly contest "the authorities telling me what to do with my body"; and a few express sincere confusion about the science. To be fair, lots of people also say they know a woman shouldn't drink if she's pregnant, but can't say what happens if she does, beyond "she could damage her baby".

So I thought I'd take a moment to write--and ask you for a moment to read--an update, a short primer. This comes from digesting loads of research over 2 decades, as well as running a diagnostic clinic in the county hospital in the South Bay, working as a school psychologist and special ed consultant in juvenile hall...and being adoptive mom of a now-35-year-old whose brain mysteriously and frustratingly--um, no...infuriatingly...just kept shooting itself in the foot.

So here you go: (citations gladly provided on request)

5% of us are on the Fetal Alcohol Spectrum. Most have none of the facial features of Fetal Alcohol SYNDROME. It looks like AD/HD of the most complicated kind, or more often sheer bad behavior, poor character, lack of motivation. And of course it looks like lousy parenting.

The most effective intervention is early identification--even if that's just speculation, that someone's peculiar misbehavior might be a matter of wiring. Then the anger, unmet expectations, terrible disappointment and resulting punishment can be attenuated. Changed. Into mercy, patience, skilled teaching and parenting--different from traditional methods.

Without this identification and intervention. the vast majority of people with FASD will have mental illness of some kind--very often depression; academic failure; trouble keeping jobs; unhealthy/abusive/exploitive relationships; and substance abuse. Money, time and emotions are way beyond control. And the person with FASD is usually just as astonished and frustrated to see himself (4 times as many males as females) screwing up yet again as everyone else. In and out of trouble with the law. Owes money to everyone.

Yep, this is--again, without appropriate recognition of what's really going on--that layer of our community that just cannot get traction. Some of you reading this may recognize some version of this pattern in yourselves, and I hope you take my message as great sympathy--it may be hard to parent someone with FASD, but it's REALLY hard to BE someone with FASD.

Of course there's lots more I could say, and will at the merest whisper of an invitation. Please be in touch if you want to know more, or see our amateurish little website: www.fasdnorcal.org

I just realized I wrote something really similar 6 months ago. This time, let me add: we'd welcome anyone who wants to join forces to bring this issue out of the fog and into adequate public services! Also do contact me if you want a training at your agency (many group homes in the area--ALL are loaded up with FASD!)

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Posted in reply to the post by kpage9:

Since I retired a year ago to work on Fetal Alcohol Spectrum Disorders......
Of course there's lots more I could say, and will at the merest whisper of an invitation. Please be in touch if you want to know more, or see our amateurish little website: www.fasdnorcal.org

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This is very informative and I applaud your contribution to our understanding. What I would also like to see is more information in a follow up post regarding how FASD happens: thresholds, trimester issues, etc that could inform prevention. . I also get that the story and the data are incomplete if we focus only on alcohol. We are in an opiate addiction crisis in our nation and that's just one other drug.
Thanks again for sharing and alerting.
Gypsey

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Posted in reply to the post by kpage9:

Since I retired a year ago to work on Fetal Alcohol Spectrum Disorders, ...

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Thanks for engaging with this slippery subject!!! Actually there's a ton of the most solid research on the subjects you raise below. As someone whose main role is translational, I keep pretty up to date, boil down the info, and share it with others...the state actually pays me for this (with social workers).

So I'll give you the briefest of answers here, but suggest you go on our website www.fasdnorcal.org if you want to take a look at the research articles themselves, or really masterful longer explanations, or are curious to root through to see what's there...

Threshold: varies from person to person. Some fetuses are protected by a genetic factor--no one knows yet how many. But normally, while the brain is developing (that is, the whole time after the first couple weeks) one dose of alcohol will cause the migrating cells to slip off their destination.

Timing: often, alcohol-related defects from early on will result in miscarriage. If the fetus is viable, damage from early exposure will cause basic brain structures to be laid down scrambled. 3rd trimester exposure will not affect basic formation, but growth of these structures will be impaired.

About opiates: alcohol does by far the most damage prenatally. Opiates PLUS alcohol exacerbates alcohol's effect.

Prevention: one of the most effective ways to prevent the next generation of FASD is to take better care of the present one. Recognition, adaptation, understanding, supports---instead of the current common responses of punishment, anger and shame.

Thanks again!

kathy

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Posted in reply to the post by gypsey:

This is very informative and I applaud your contribution to our understanding. What I would also like to see is more information in a follow up post regarding how FASD happens: thresholds, trimester issues, etc that could inform prevention. . I also get that the story and the data are incomplete if we focus only on alcohol. We are in an opiate addiction crisis in our nation and that's just one other drug.
Thanks again for sharing and alerting.
Gypsey

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Fetal Alcohol Syndrome is a focus on the consequences that may happen to an unborn baby whose mother drinks alcohol. Damage can be done in the first few weeks of pregnancy when a woman might not yet know that she is pregnant. We know that drugs also present many serious problems for the unborn, but this is about alcohol.

The warning on Kate's site ...if you drink, don't get pregnant! seems unrealistic, since many times drinking can lead to lowered inhibitions and poor judgment, which is a perfect combination for a woman to get pregnant. Also, who can relate to having an intimate evening, without alcohol? It's a common pre-sex lubrication. I don't think this is going to change.

The intelligent action for a woman who drinks and has pregnancy potential, is to use ongoing birth control, rather than hope for the best when she's put herself in a common, but vulnerable position. One of the last things on her mind is the possibility of getting pregnant, and the other is the danger to her unborn, if she does. Having fun is the number one thing on her mind, and that's pretty normal.

I have a feeling that many people who had a mom that drank alcohol during pregnancy, post Prohibition, have been showing up with FAS, in great numbers (don't have statistics of course). In my lifetime of 73 years, I have met a lot people with impaired brain function, in addition to some of the other manifestations listed on your website. (The pictures are also revealing.) Since alcohol became the "legal" drug of choice for socializing, it seems feasible that women who chose it (for various reasons besides socializing, such as relief from depression, anxiety, etc.) would have been prime candidates for having FAS babies. I see much evidence of this, but until now didn't have a clue about the possible cause.

I'll share my own history, which includes bi-polar parents who drank alcohol to self medicate, in addition to smoking cigarettes. As I grew up, I had an aversion to both, and it's easy to see why. Alcohol always led to violence. Cigarette smoking meant difficulty breathing. My brother was born 6 years after me, and from the time of his birth, he was angry. His head was unusually large, and I heard talk of the possibility of "water on the brain". That's a distant childhood recollection.

He continued to evolve as a problem child, and even in nursery school, he was a challenge. In grade school, I was called from class many times, to take him home because he was disruptive. I was the primary caretaker, since my mother left when I was 7. There were times it took several adults to restrain him. We were polar opposites. I was introverted and obedient while he was extroverted and rebellious.

I left home at 12 to have a chance at survival away from this dysfunctional home life, but he remained with my father. He was eventually removed by social services, who placed him in several unsuccessful foster homes.
As an adult, he joined the Army, and was discharged after a year. He was institutionalized several times, and diagnosed as Bi-polar. He refused medication, but used large amounts of LSD.

I banned him from my home, since I didn't want my 2 young children exposed to this behavior. I had very little contact, in my effort to protect myself and my sons. He ended up blowing his brains out at 43. I was living in Hawaii at the time, and couldn't afford to attend the funeral in California. In reality, I had no desire to.

So, we were both exposed to alcohol in the womb, but I escaped the Bi-polar disorder, and the substance addiction. Because I didn't drink, I often felt that I was a "misfit". No one understood. At the neighborhood gatherings, I drank 7up. At one party, my drink was spiked with alcohol, and within an hour I was vomiting. Before I left to return home, I could hear the snickers and laughter. It was another defining moment in my aversion to alcohol. I hardly even drink a glass of wine, except on rare occasions.

If I had a desire to alter my reality, I would choose cannabis, and have, at various times. However, I don't usually use it to shift my mood, but more as pain/stress relief. In the process, I notice that I feel an elevated sense of well being. I still don't like smoking, but there are many ways to access the benefits of this wondrous healing herb. I have no information on the effects of cannabis on the unborn child, but that's a study that may be underway.

Thank you for having the courage to engage in this topic here on Wacco, and in the "wine country" of all places!

Sandy's post could not have better illustrated the complex, tragic tangle of FASD (Fetal Alcohol Spectrum Disorder INCLUDES the tiny number of people who have FAS--Fetal Alcohol Syndrome, which requires abnormal facial features for diagnosis).

The most tragic part, in my opinion, being that this whole raft of neurobehavioral dysfunction goes entirely under the radar of "bad behavior". We're working--and here with Sandy's help--on raising our community's awareness this stuff, so that it will get to the level that autism currently enjoys. Resources! Diagnosis! Understanding! Accommodations! Support for family! NOT JAIL!!!

Couple points:

Sandy's 1st paragraph about "If you drink, don't get pregnant"...she later answers herself. Yes, USE SOME FREAKIN BIRTH CONTROL (not her words) until you're really ready to make babies.

2nd: we DO know how many. 5% of us are on the Fetal Alcohol Spectrum. Many of us just have to work really really hard to keep a semblance of daily organization of life. Without recognition that we do have a neurobehavioral disability, we will struggle to maintain our balance, as the neurotransmitters responsible for mood stability and "getting the big picture" are affected (along with lots else). Many others of us DON'T maintain our balance, and are diagnosed with Bipolar Disorder. Attention Deficit Disorder is the most likely diagnosis we get, in the vast absence of FASD-savvy clinicians. Too bad "gullibility" isn't diagnosable...

WITH recognition of the disability comes--if you know where to look--a wide network of informal support, and a very few professionals who can truly help. Mostly comes mercy and patience with oneself.

Meanwhile, in Canada, a law was just proposed (passed?) that offers/requires foster parents to have EXTENSIVE training and true support around FASD. Go Canada!

kp

You cite the stat that 4 times as many men than womyn are affected by fasd. Why? Could it be that the modern world favors the nature of one gender over another? Biosex is an equal draw, what's the hypothesis for the unequal effect?

You get the same 4/1 proportion in AD/HD and Autism, and as far as I know no one is sure why. Some postulate that the little girl fetus is somehow more resistant; others postulate that the little girl fetus is less resistant and doesn't make it till birth.

(I'm curious--THIS is the part that most piqued your interest?)

kathy

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Posted in reply to the post by rossmen:

You cite the stat that 4 times as many men than womyn are affected by fasd. Why? Could it be that the modern world favors the nature of one gender over another? Biosex is an equal draw, what's the hypothesis for the unequal effect?

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What caught my interest first was the social good intention of your post. As I read it I had a reaction; more moralistic psychoanalytic effort to identify as victim's, please don't take my judgement as anything but my judgement which I take as an intro to exploring my own thoughts. When i got to the 4 to 1, I thought that's weird, I wonder if it has anything to do with my chosen assumption that we live in a crazy, unsustainable world which doesn't support us to be fully ourselves (I'm sure fasd is part of this). I can't claim fasd myself since my mother didn't drink, I have other issues.

Given that we are complicated animals who live in a complex world mostly of our own making and are loath to experiment intentionally on our own kind, has there been any rat studies on fasd and specifically on the two postulates you name to account for gender difference in expression of fasd?

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Posted in reply to the post by kpage9:

...(I'm curious--THIS is the part that most piqued your interest?)

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