What is the True Incidence of FAS Disorders?
Why Don’t We Know the Answer?
By Bruce Ritchie
As I wrote some time ago, the current rates of FAS/E are so grossly under-diagnosed and under-reported as to be meaningless. There are many reasons for this.
1. Physicians do not receive training in FAS diagnosis at medical school, with very few exceptions. It is not part of the curriculum, yet. This is obvious from the difficulties we have in referring people to doctors who are trained to diagnose FAS. If physicians are not trained to diagnose FAS they will attach other labels to symptoms. Often the prescribed treatment will be inappropriate and the prognosis will be poor.
2. Studies on addiction in Ontario have shown about a 10 - 12% alcohol addiction rate among adults, with another 20% drinking to a level that places them at high risk.
3. Doctors usually do not screen their patients for alcohol use and avoid broaching that issue with patients of child- bearing age.
(a) They are often uncomfortable with the issue themselves.
(b) They received very little training on the entire subject of alcohol in medical school. According to my son's birth mother, a family physician, her entire training on the subject of alcohol was less than ½ day in medical school. Nothing on the effects of prenatal alcohol exposure and nothing on diagnosing FAS/E. Call the various Faculties of Medicine and ask who is teaching undergraduate physicians (not specialists) to screen for and diagnose FASD. It will shock you.
(c) Physicians should be routinely using urine alcohol test strips to screen for alcohol use just as they do for glucose, pH, keytones, protein, etc. Yet they are often resistant to the concept. Many even avoid asking non-threatening questions about alcohol use during regular physicals. Don't ask. Don't tell. Hear no evil, see no evil, speak not about evil and you don't have to diagnose and deal with it.
(d) Some physicians also have substance abuse problems. Doctors who treat their own problems chemically will also tend to treat their patients problems chemically. My son's birth mother, a family physician, died at age 41 from advanced alcoholism. She had been through many treatment programs (including Doctors on Chemicals, Alcoholics Anonymous and several major treatment centres).
(e) For years, some doctors prescribed "alcohol drips" to delay onset of labour. This usually happened in the third trimester. A current study reports that a single exposure to high levels of ethanol (the alcohol in beer, wine and spirits) can kill nerve cells in the developing brain. This exposure causes brain cells to commit suicide by a process called apoptosis or programmed cell death. Some doctors will still say at drink or two a day won't hurt. Some still suggest drinking beer to "let down the milk" after the birth.
4. With any condition, doctors generally deal with the more extreme (obvious) cases and with FAS it is the extreme end of the spectrum that is most likely to be diagnosed, if at all. Yet research has not found a safe level of alcohol exposure during pregnancy and we have seen that the damage is a continuum, rather than a threshold condition. So likely most affected children are dealing with reduced skills, talents, IQ, AQ, and have more mental health, physical and learning issues than necessary. Most damage is undiagnosed, but not unpunished. If it is undiagnosed it is not part of the statistics.
5. In our middle-income neighbourhood public school, 10% of the students have been formally “identified” as having serious learning and/or behavioural disabilities. Another 5% require “identification”. My son, David, was diagnosed with FAS shortly after he was born. He has an IEP (Individual Education Plan) based on a Communications Disability. The other students generally have been diagnosed ADHD. Sure thing. ADHD does not come with the social baggage of an alcohol associated disability. Unfortunately, it also means the kids don't get the proper intervention. Many other schools in other areas have far higher rates of IPRC “identification”. Some other school districts discourage “identification” because they would have to provide services with little funding backup. The Canadian Centre for Studies for Children at Risk, at McMaster University Medical Centre, states that 20% of Canadian children have a serious mental health problem.
6. Often the woman does not know she is pregnant until the third + month. It only takes a party or two to do damage to the baby. The baby may have been swimming in alcohol at many parties before the pregnancy was known. In some cases, it is much longer. If she stops drinking then, she will often assume no damage has been done. Psychologically, it is extremely difficult for anyone to admit something they did could have seriously harmed their child. That being the case, what are the odds she will discuss the issue with anyone, including her doctor?
According to the U.S. Department of Health and Human Services. (1998), preliminary results from the 1997 national household survey on drug abuse, Rockville, MD: Substance Abuse and Mental Health Services Administration:
51% of women of child-bearing age between 18-25 and 53% between 26-34, report the use of alcohol within the past month.
17% of women of child-bearing age between 18-25 and 13% between 26-34, report binge drinking.
A national survey found that more than half of women age 15-44 drank while pregnant.
Of the women who reported drinking during their pregnancy, 66% reported drinking in their first trimester; 54% reported drinking in their third trimester.
7. Massive Denial is a hallmark of alcohol addiction. So those who are addicted to alcohol might not recognize they have a problem and may not stop drinking. Addiction by definition is the removal of voluntary control. Subsequently they will likely verbally minimize the quantity they drank and will resist future diagnoses that might implicate them as the source of their child's problems. With some exceptions, couples tend to have similar drinking habits and they tend to socialize with others with similar lifestyles. Sudden abstinence during pregnancy requires the support of the father, families and friends. Yet the pregnant mother is often placed in social situations where she is encouraged to "have just one drink. It won't hurt you or the baby". The social pressure to deny alcohol has affected the child is great.
8. Social condemnation of alcohol problems leads families to conceal the problems. At the higher end of the income scale, it is easier to hide the problem than it is among those in regular contact with social service and health care agencies. Families become enablers and the problem drinking progresses. Again, social baggage attached to the word "alcohol" results in concealment of problems in the children. The concealment leads to failure to properly treat the child and results in development of secondary disabilities. Many receive the label, "Black Sheep".
9. Many FAS/E children are born to multi-generational drinkers. FAS/E children are having FAS/E babies. Inability to predict consequences, impulsivity, high potential for alcohol addiction and a hormone driven twitch in the kilt are a dangerous combination. These individuals are less likely to get proper prenatal care, admit to alcohol consumption (let alone accurately admit the quantity and frequency), or maintain proper nutrition during pregnancy. Many of these FAS babies will never be diagnosed.
10. Studies indicate that more than half the prison population was likely exposed to high levels of alcohol prenatally and should be formally diagnosed. 3% of the U.S. population are currently guests of the prison system. Some prisoners are regular repeaters. Some are one-time offenders. What percentage of the population is a guest of the “justice” system at some point during their life? In a Canadian study, current data indicate that 55% of federal offenders reported that they were under the influence of alcohol, drugs or both on the day they committed the offence(s) for which they are now incarcerated. Approximately 50% of the federal offender population suffers from some type of substance abuse problem. http://www.acbr.com/fas/offpro_e.htm How many were prenatally exposed to alcohol?
11. Canada's Justice system costs roughly $10 billion annually. When I administered a police services computer system, including Occurrence Records, less than 20% of police calls did not involved alcohol or other drugs. If only half the Justice budget were attributable to alcohol, then the cost would be $5 billion per year. Alcohol taxes generate $3.2 billion per year, a $1.8 billion annual shortfall in this area alone.
12. It is estimated that perhaps 80% of children in protection by Children's Aid Societies, DFS, etc. are FAS/E. However, diagnosis is often withheld so that FAS/E does not have to be disclosed in adoption proceedings. If they get a diagnosis, they have to disclose or face lawsuits. If they do disclose it could reduce the number of potential adoptive parents for that child. If they don't get a diagnosis, they don't have to disclose and the child could be easier to adopt out. Unfortunately, it also means the proper interventions are not done and the child and family deal with years of frustration and heartache. In my opinion, failure to diagnose borders on criminal negligence. Foster parents have been threatened with dismissal if they take a ward in for diagnosis.
13. Governments have failed to recognize the gravity of the situation and only provide the tiniest of token funding. In Canada, the federal government announced $11 million (Canadian funds) ($3 Cdn = $2 US) for FAS over 3 years. Virtually none of it has made it to the grassroots where the battles are being fought. At $3 million expected lifetime cost to the taxpayers per FAS/E individual, David's birth mother's 4 FAS/E children wiped out the Canadian national FAS budget.
14. Massive Denial among governments. If the true extent of prenatal alcohol related damage were “known”, the cost required to address the issues would be massive. In some cases, the true extent of FAS/E, if recognized, would bring “shame” to the village and is officially minimized or ignored. In some cases, the leaders themselves could be alcohol affected, an added incentive for denial. In any case, governments are themselves addicted to alcohol tax revenue. They see booze and gambling as the geese that lay the golden eggs, as long as they can ignore the social fallout.
15. The beverage alcohol industry has a very powerful advertising program, showing alcohol as a healthy part of the lifestyle of youth. Attacking such fun and games would paint one as a “spoil sport”, anal retentive and otherwise general poop.
16. The beverage alcohol industry has the same level of morality as the tobacco industry. Any attempt to control them is met with well financed attacks. They finance tainted research to promote the benefits of their product. (Most Australian wineries are owned by doctors). They finance organizations purporting to deal with the results of alcohol. If anyone goes against the party line, they kill the funding. Some politicians receive significant financial support from booze related sources. It costs money to get elected. Who says you can't buy votes?
17. Independent, data collecting systems have not been established and properly financed to identify the extent of the problem. When doctors are properly trained and given incentive to screen for or diagnose FAS, the data could become meaningful, but the truth about FAS would be politically and financially embarrassing to governments.
18. There are two geneticists in southwestern Ontario. They should have a case-load of about 250 new patients per year. They have more than 3000. Virtually all of their funding is for familial cancer research, leaving virtually no resources to dedicate to prenatal alcohol exposure issues. They are simply stretched far too thin and lack the desperately needed financial resources. No diagnoses, no accurate statistics.
All of the above, and more, work together to grossly under- report and under-estimate the incidence of damage caused by pre-natal exposure to alcohol. The effects of prenatal alcohol exposure are pervasive throughout society. In human and financial terms, the cost is astronomical and rising by the minute. It was not the ideology of communism vs capitalism that caused the collapse of the U.S.S.R., it was vodka.
Bruce Ritchie, Director of FASLINK