The
Abstract:
Fetal Alcohol
Syndrome (FAS), is something whose mere mention
implies different things to different people. It is a
'syndrome' immersed in stereotypes by the North
American society in which we live, the majority of
which are sadly negative. In the paper that follows,
though written from a North American perspective, I
will refrain from examining the specifics of these
stereotypes, for to acknowledge them would only give
them attention that I do not believe that they deserve
in the context of this article.
This paper is
about FAS and the way we, as a North American society,
educate people about its known, and possible, causes.
The paper is split into six sections. It begins by
looking at a history of the discovery of FAS and Fetal
Alcohol Effects, (FAE) and goes on to define each to
avoid confusion within the paper. Having dealt with
descriptions of FAS/FAE, it briefly examines four
articles that offer a contrasting view to that of the
mother being soley responsible for a child with it, by
showing that alcohol is a teratogen on the sperm, and
suggesting that this may effect the fetus. The paper
then offers a suggestion as to why FAS/FAE is seen to
be such a social and societal leper by comparing its
public awareness to the initial awareness of Acquired
Immuno Deficiency Syndrome (AIDS) in the 1970's and
80's, and suggesting that a different approach is
needed to the education of the subject. The conclusion
is very deliberate.
This paper does
not try to give specific answers to the questions on
FAS and our education of it. To do so would need a
much longer and larger paper than is applicable to
this assignment.. The idea of what follows is to give
an overview of what we currently teach people around
FAS and FAE and to show that from information that is
now starting to be slowly become available, that we
need to re-examine just what we are teaching. Whether
or not the education that currently give people around
this subject is fair and accurate remains to be seen.
My hope is that this paper at least gives the reader
food for thought.
A brief
history:
In 1973, whilst
doing research on human behavioral teratology (the
study of birth defects) [Drs] Kenneth L. Jones
and David W. Smith along with their colleagues in
Seattle identified a specific pattern of
malformations, growth deficiencies and Central Nervous
System (CNS) dysfunctions that were observable in some
offspring of alcoholic mothers (Jones, Smith, Ulleland
& Streissguth, 1973), a pattern that two of them
then named Fetal Alcohol Syndrome (FAS), (Jones &
Smith, 1973). Though this had been previously brought
to light some years before in clinical studies of
alcoholic mothers, (Lemoine, Harousseau, Borrteyri
& Menuet, 1968; Rouquette, 1957) once the two
Seattle groups had had their findings published in the
much read and respected medical magazine "Lancet",
interest in the subject quickly, yet quietly took hold
of those whom read it. By the end of that decade FAS
was recognised as one of the three leading causes of
mental retardation and had a prevalence that was
comparable to Down Syndrome and spina bifida (Smith,
1980). Of the three, FAS was the only one known to be
preventable. It was around this time that, further
research recognized other characteristics within
children that were not FAS, but were linked to it and
in 1978, the term Fetal Alcohol Effects (Clarren &
Smith) was coined.
Definitions:
The terms Fetal
Alcohol Syndrome, and Fetal Alcohol Effects are
sometimes confusingly put together in the same phrase
as if they mean the same thing. They are not, and so
should be clearly defined:
Fetal Alcohol
Syndrome (FAS) is defined and characterized by a
cluster of congenital birth defects that develop in
the womb as a result of exposure to alcohol either
before (Jones, 1998) or during pregnancy. These birth
defects are best recognized by pre and postnatal
growth deficiency of the child's, facial
malformations, Central Nervous System disfunctions,
and a varying degree of major organ system
malformations. In effect, they are generally visibly
recognisable.
Fetal Alcohol
Effects (FAE), (or Alcohol Related Neurological
Defects (ARND), a term now being recommended to
replace FAE, (Jones, 1998) and which I will refer to
for the rest of this paper) is as its name implies,
structural and functional defects within the head
attributed to prenatal exposure of alcohol. These
defects as generally seen include a small head size
and abnormalities in the brain which cause such things
as poor motor skills, poor hand-eye coordination and
leads to such things as learning difficulties within
the classroom, and behavioral problems which include
poor social interactions. This is seen in the actions
of the child/youth/adult, but is not necessarily
visibly recognisable. ARND is inclusive of FAS and
provides a category for those whose birth defects do
not fully meet the FAS case definition and who (for
the most part) do not have the facial deformities, so
outwardly they appear normal.
FAS/ARND are
conditions which suffer on the North American
continent from a bad case of stereotyping. Having only
been officially acknowledged to have existed for some
twenty to twenty five years, they are seen by the
majority of educators and recognised text books that
are primarily caused by a mother's alcohol consumption
either during or prior to pregnancy. (Streissguth,
Bookstein, Sampson and Barr. p. 20) Though there are
no definitive answers to just how much alcohol is
needed to affect the womb, the writings that are
available for the most part suggest, and in fact
clearly point the finger of blame, solidly at the
mother as the sole person responsible. Yet is, or was,
this rush to judgement wrong?
Articles on the
subject suggest what?:
In her paper
"Effects on Future Generations of Paternal Exposure to
Alcohol and Other Drugs", (Winter 1987/88) Gladys
Friedler looks at how exposure to alcohol and other
drugs effects the offspring of fathers who are exposed
to one or both. In citing research done at Boston
University School of Medicine, Friedler informs us
that drug research on mice indicates that exposure
"can induce long-term changes in the normal
developmental and behaviourial patterns of subsequent
offspring". (p. 128) She then goes on to inform the
reader that alcohol, like opiates, is capable of
profoundly altering the reproductive chemistry in
males. For a paper that was written in 1987, in the
context of things relating to what we know of paternal
alcohol exposure, she had some interesting and
far-sighted things to say on the subject. In her
conclusion where she writes that more detailed
research needs to be done on the subject. A thought
echoed by almost everyone who was or is writing on
this topic.
A researcher who
is much quoted in this field is [Dr] Ernest L.
Abel. In his paper "Paternal exposure to alcohol",
(1992) Able offers us reference to peoples suspicions
from as far back as the Talmud, that a males exposure
to alcohol effected their offspring.
He also tells
his readers of research on the subject (and its
findings) done on rats and mice done by himself and a
number of researchers throughout history. He throws in
an interesting twist to his findings when he writes of
a confusing fact that data collected two different
sets of rats exposed to the same amount and type of
alcohol differed greatly. (p.141) The paper is a
fascinating mixture of history and detailed
descriptions of experiments ending not with a solid
conclusion but with the observation that in his
experiments, alcohol would seem to have had damaging
effects on the male sperms deoxyribonucleic acid
(DNA). (In effect the make-up of each and every
person!)
In his much
quoted and now increasingly referenced piece of
research "Effects of paternal exposure to alcohol on
offspring development" [Dr] Theodore J. Cicero
(1994) suggests the possibility that the view that a
mother is solely responsible for a child who is born
with FAS is wrong. By pooling a vast amount of
research of the effect of alcohol consumption on
mammals, animals and humans, Cicero theorises that we
have overlooked just what the impact of a males
consumption of alcohol may have on the offspring to be
born. Whilst admitting that he offers no conclusive
proof, he does none the less, offer some interesting
food for thought on the subject stating in his
'Conclusion' that ". . . results relative to the
paternal effect of alcohol on pregnancy are still in a
very early stage of development . . ." (p, 40) and
suggests that more work needs to be done in this
field, possibly with animals being those that are
studied. He also says that we need to clearly define
just what the parameters should be for studies of this
kind.
In the context
of getting ones message out on the thoughts of a
subject to the world, the Alaskan Department of Health
and Social Sciences, Division of Alcoholism and Drug
Abuse (Jones, 1998) put series of pages on the
Internet about FAS and ARND that are as thought
provoking as they are quietly controversial. In
admitting that alcohol abuse is Alaska's number one
health problem, the pages look at the incidence and
risk factors within the state and produce some very
thought-provoking statistics. Like a person who is
admitting that they have an addiction of some kind,
the Internet pages have such headings as "Men Have
Babies, Too", and subsections with questions such as
"Does FAS ever go away or get better?". One point that
is very well made and presented, is that of advising
men to stop using alcohol and drugs at least three
months before attempting to have children, and staying
that way throughout the pregnancy or order to support
the mother. It is a simply written and presented
series of pages that are accessible and easily
understood by all who chose to venture to this
Internet site whatever their level, or lack of,
education.
In comparing the
four articles (deliberately presented here in
chronological order), the one thing that stands out is
the how, as we begin to understand and learn more on
the subject of prenatal exposure to alcohol, so the
way the way those who write about it, seems to get
more interesting and easier to read. Research on this
subject appears to show that we are only just touching
the edge of the ice-berg of what there is to know on
the subject, and we have to find ways of getting that
message out to the public. When Friedler initially
published her findings in 1987/8, the idea that a mans
drinking could damage their unborn offspring was still
a relatively unexplored field. The work published by
people such as Doctors Able and Cicero, has added to
that awareness by writing in about the subject in ways
that the average person can understand. The final
series of articles put out by Alaska's Division of
Alcoholism and Drug Abuse are the most readable and
user friendly to understand of the four that I have
written of here. Though FAS/ARND are rarely singled
out for special mention in these articles, they are
mentioned, and the fact that we are at last starting
to acknowledge that alcohol does have an effect on a
males sperm by being a teratogen, brings us to the
question that is the reason for writing this paper:
Have we missed the boat on the way we educate people,
especially those wishing to have babies, on what we
teach them around the effects of alcohol on the
development of their offspring?
So why the
confusion in what we know and
understand?
Statistics
indicate that alcohol consumption is on the increase.
Yet our awareness of alcohol consumption, and the
education of our expectant families,especially that of
youth, primarily evolves around the mothers. Any kind
of drug or alcohol prevention strategy needs three
intertwining factors in order to work: 'Health
promotion', 'Research' and the capability for
'Intervention'. Once these three factors are in place,
awareness and eduction programs can be targeted to
particular populations. At the moment, that 'awareness
and education' is primarily aimed at females, or at
least focused on reduction of alcohol use for
females.
Yet, there is a
growing amount of evidence that suggests that male
drinking may be just as likely as female drinking to
cause damage to the fetus. Why then are we not more
aware of these dangers?
Though there are
many theories on this, the most probable, (and no
doubt controversial!) would seem to be that it is seen
to be a condition that effects those on the outer edge
of societal norms. An example here would be that of
Acquired Immuno Deficiency Syndrome (AIDS): When AIDS
first showed its face on North American shores in late
1970's and early 1980's, we had Conservative and
Republican Governments in power, and our collective
military prowess or might, was far more important than
the welfare of those who were not wealthy or middle
class. AIDS seemed to only effect homosexuals, drug
users, blacks, Hispanics, and others seen to be on the
outer edges of the American dream. They were not seen
as Christian, white, popular, or God fearing, such was
the mood of our continent at the time. They were not
stars or media icons either. No-one in mainstream
society looked up to them, so they were pushed gently
to one side and quietly told to shut up and go away!
Then, seemingly out of no-where, someone who was
famous was reported to be a carrier of the virus, and
then another, and another, and another! Quite
suddenly, all these famous people who were a part of
that 'American Dream' had AIDS! In hindsight, it seems
to have happened overnight. But it didn't! People had
had it for years and were too frightened of the
stereotypes to go public about it. Then, for reasons
such as proven facts that you didn't have to be 'gay',
or a 'drug user', to be a carrier, it became okay to
admit that you had it! The governments were forced by
the people to acknowledge it, and those responsible
for the 'American Dream' even sponsored charities to
help raise money for it!
Which leads us
to the question then, that if FAS and ARND have been
around for as long as AIDS, why is it still seen as
such a social leper and why is there not better public
awareness of this either in hospitals, doctors
offices, or in the media? The reason, I believe, would
seem to be that it's because no one who is remotely
famous has either had it themselves or admitted to
having a child born with it. Until that happens public
perception just will not change. For something to get
noticed these days in our society, some rich media
icon of a person has to stand up and take notice of it
to get everyone else's attention.
Within this
truthfully sad statement of fact about North American
society lies the basic reason for the problems of
education and miseducation around FAS and ARND. Unless
the subject gets some major media attention, those who
research it, will remain in the dark shadows of our
medical and public perceptions. And without that
public attention, those who need the educating the
most on this matter, (Our youth!) may chose not to
take any notice of just what alcohol can do to their
offspring, so we will see a continued rise in the
number of children born to young parents effected by
this.
Conclusion:
With FAS now
recognised as the leading cause of mental retardation
among new born children, (and still the only one of
the top
three known to
be preventable!) the need for the education of our
expectant families and youth can surely not be
clearer. Whilst there are a number of excellent peer
educational workshops, groups, and resources such as
those put out and by the 'Alcohol and Drug Education
Service of British Columbia' [Canada], (Carr,
1998) the need for both male and female youth
education 'of self' is now abundantly clear. Unless
we, the Child, Youth and Family Counsellors of today's
society, can get the message to them through the
media, and somehow make the message of these dangers
worth taking notice of, it would appear that things
may not move along very fast.
In looking at
ways to get that message across, we cannot wait for
public opinion to make the subject popular. We need to
change what we are focussing on and perhaps begin to
look at gearing the education on the males
contribution to the equation of a child first. After
all, education aimed at females has not worked that
well so far! The idea that both male and female
drinking may damage a fetus is not a pleasant one to
think about for an adult, yet alone our youth. For the
last twenty five years the finger of blame has pointed
solely and squarely at the female. With evidence now
suggesting that the males alcohol consumption 'may'
have an effect on fetal development, it is definitely
time to take a look at the focus on who we are trying
to educate here.
For a government
and its people, much like a single human being, it is
hard to look in the mirror and own up to the possible
flaws in oneself. Twenty five years ago, North
American society was biased, racist, and closeted in
many ways. Yet can we, as a people, admit to ourselves
and our children, that we may have made a mistake?
That we may have gotten our education on alcohol, the
fetus and FAS wrong? That quite possibly, the male may
be as guilty as the female for the problems that
happen to the development of the child within the
womb?
There is an old
saying about how 'prevention is better than cure'.
There is no cure for FAS or ARND, yet there is
prevention! The question of whether or not 'Alcohol,
the fetus and FAS' is an education that we have
misdirected is not one that is easily
answered.
Until such time
as concrete evidence is shown to the contrary, there
are many who will refuse to believe that the fault and
the responsibility can not be anyone's other than the
mothers. As 'Child, Youth and Family Counsellors', I
do not believe that we have the right or power to make
a judgement on the case one way or another, even if it
turns out the initial education was misdirected. I do
believe however, that we have a moral obligation to
educate those whom we work with of 'all' the
information that is out there. Then let people make
their decisions on their own. After all, isn't that
what good counselling is all about?