FASD grossly under-diagnosed and under-reported
Bruce Ritchie

The current rates of FASD are grossly under-diagnosed and under-reported. There are many reasons for this.

1. Physicians do not receive training in FASD diagnosis at medical school, with very few exceptions. General Practitioners and Family Physicians are the primary line of defense in preventive and diagnostic screening, yet they are not trained or equipped to identify alcohol use in their patients or diagnose prenatal alcohol exposure. This lack of physician training is obvious from the difficulties we have in referring people to doctors for FASD diagnosis. If physicians are not trained to diagnose FASD 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 FASD.

(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.

(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 45 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.

(f) Meconium (the first bowel movement by a newborn infant) testing should be automatic. The meconium based assay incorporates a panel of Fatty Acid Ethyl Esters as bio-markers of maternal alcohol use during the last half (4.5 months) of pregnancy. It does not detect alcohol use during the first trimester. Recent studies with the MecStat-EtOH assay (Avitar Technologies Inc.) found fetal exposure to alcohol in 15-18% of newborns tested, approximately 4% of the newborns had elevated results. These results compare to those included in the CDC Behavioral Risk Factor Surveillance System and the SAMSHA National Household Survey on Drug Abuse.

As the meconium test does not detect exposure in the first 4.5 months, it would not include those mothers who drank during the first trimester and quit when they discovered they were pregnant. It is critical that GP's and Family physicians regularly screen their patients for alcohol and other drug use.

4. With any condition, doctors generally deal with the more extreme (obvious) cases and with FASD 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. Typical of school boards in Canada, a major southwestern Ontario School Board (urban / rural mix) with 28,000 Elementary and Secondary School students, has 6,000 students (21.4%) receiving services from the Special Education Department. While not all the individuals with disabilities are identified as the disabilities having been caused by prenatal exposure to alcohol, the vast majority of the disabilities are of types known to be caused by prenatal alcohol exposure.

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. ADHD does not come with the social baggage of an alcohol associated disability. Unfortunately, it also means the children don't get the proper intervention. Many other schools in other areas have far higher rates of “identification”. Some other school districts discourage “identification” because they would have to provide services with little funding backup.

6. Divide a condition into enough small sub-diagnoses and the condition magically disappears from statistical relevance. Fetal Alcohol Spectrum Disorders is a continuum of a wide range of disabilities of varying severity. FASD is not a threshold condition. Fetal Alcohol Syndrome is a sub-category of Fetal Alcohol Spectrum Disorders with specific diagnostic criteria. It is not necessarily more disabling than Fetal Alcohol Effects, or Alcohol Related Birth Defects, or Alcohol Related Neurological Disabilities, or pFAS, or Static Encephalopathy, etc. Some of the sub-diagnoses have more serious medical (physical and mental health) implications and others have more serious educational, social and legal consequences. All are directly caused by prenatal alcohol exposure and affect the health of the mother and the child. The GP/Family Physician is still the critical primary line of defense and diagnosis but is generally untrained, ill-equipped and disinclined to do so.

7. 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. Statistics Canada, Canadian Community Health Survey, 2000/01 reports that between ages 20 to 34, 19.9% of females report having 5 or more drinks on one occasion, twelve or more times a year. Depending on age bracket, this number ranges from 13.8% to 26.0% who report 5 or more drinks on one occasion, twelve or more times a year. An additional 32.2% ages 15 to 34 report using 5 or more drinks on one occasion, 1 to 11 times a year.

Five drinks will give a typical female a Blood Alcohol Level of .25%, three times the legal limit. 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?

8. Massive Denial is a hallmark of alcohol addiction. So those 10 - 12% 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 abstinance 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.

9. 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". Many come into conflict with the law and are jailed because of their disabilities. Yet brain injury cannot be cured with punishment.

10. Many FASD children are born to multi-generational drinkers. FASD children are having FASD 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 FASD babies will never be diagnosed but will continue the cycle.

11. Studies indicate that more than half the prison population was likely exposed to high levels of alcohol prenatally and should be formally diagnosed. About one in every 37 U.S. adults either was imprisoned at the end of 2001 or had been at one time. The 5.6 million people with ''prison experience'' represented 2.7 percent of the adult population, the highest incarceration level in the world, with a current rate of 726 per 100,000 population. Canada's rate is 116 per 100,000. Some prisoners are regular repeaters. Some are one-time offenders.

12. Canada's Justice cost is 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 shortfall. The beverage alcohol industry has a large vested interest in minimizing the public perception of the real effects of their products.

13. It is estimated that perhaps 80% of children in protection by Children's Aid Societies, DFS, etc. have FASD. However, diagnosis is often withheld so that FASD 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, heartache and personal and financial disaster. 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.

14. 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, my son's birth mother's 4 FAS/E children wiped out the Canadian national FAS budget.

15. 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 are 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 and financial fallout.

16. 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. Truth in advertising would show, in Robin WIlliam's words, "It's 3 A.M. and you have just peed on a dumpster. It's Miller Time". Or they would show children with FAS.

17. 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?

18. Independent, data collecting systems have not been established and properly financed to identify the extent of the problem.

19. Doctors need to be trained, equipped and required to screen all their patients for alcohol and other drug use. They are resposnible for their patients' health and cannot competently do the job without the proper information.

20. Meconium testing for all newborns should be mandatory.

21. The amount of death and disability caused by alcohol globally is similar to that caused by tobacco and high blood pressure, concludes a review in The Lancet (Vol. 365 No. 9458, Feb. 5, 2005). Overall, four percent of the global burden of disease is attributable to alcohol, 4.1% to tobacco and 4.4% to high blood pressure. Alcohol is causally related to more than 60 different medical conditions, including breast cancer and coronary heart disease. In most cases alcohol has a detrimental effect on health.

The study states, “A stark discrepancy exists between research findings about the effectiveness of alcohol control measures and the policy options considered by most governments. In many places, the interests of the alcohol industry have effectively exercised a veto over policies, making sure that the main emphasis is on ineffective strategies such as education.” .

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.

"Denial" is not just a river in Egypt.