FASlink Fetal Alcohol Disorders Society Home Page

FASD, FAS, FAE, pFAS, ARND, ARBD, SEAE
Fetal Alcohol Spectrum Disorders, Fetal Alcohol Syndrome, Fetal Alcohol Effects, Partial Fetal Alcohol Syndrome, Alcohol Related Neurological Disabilities, Alcohol Related Birth Defects, Static Encephalopathy Alcohol Exposed

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FASlink
2448 Hamilton Road
Bright's Grove, Ontario,
Canada N0N 1C0
Phone: (519) 869-8026
E-mail: info@faslink.org

What you drink, baby drinks too.

FASlink around the world.

CCSA - Canadian Database of FASD Resources

NOFAS - National & State FASD Resource Directory

To ignore the facts does not change the facts.

Households with disabilities are always in "survival mode".

Remember - we cannot tell or teach them what to think - but have to work at "how to think"

If you tell a child something a thousand times and he still does not understand, it is not the child who is a slow learner. To be an effective teacher, you have to always be open to learning.

Parenting is always done by amateurs. By the time we get to be reasonably competent we are no longer fertile.

Parents tend to transfer many of their own neuroses and emotional baggage to their kids. Kids with FASD simply emphasize many of the "normal" child raising concerns as well as add a bunch of others.

If you are going to train a puppy, first you have to train the trainer, and deal with the trainer's issues. If you have a stressed-out parent you will have a very stressed out child. One of the greatest gifts we can give to our children is being calm, particularly under stress.

Another great gift is that of unending patience. Without patience, you will drive both your child and yourself nuts.

An equally important gift is an off-the-wall sense of humour. Our kids can find humour in the neatest places. The best way to defuse a confrontation is with humour. You may be able to escalate a power struggle to where you can "win" and get immediate compliance, but everyone loses in a power struggle.

Pick your battles carefully. Don't set yourself up to be permanently "tuned out".

FASlink submission to WHO survey on health problems related to alcohol consumption.

Thoughts & Musings

If it quacks like a duck ....

A fresh view of the epidemiology and a major change in the estimation of the prevalence of FASD.

Based on Statistics Canada's "Canadian Community Health Survey" and their Birth and Population statistics for the concurrent period, It is likely that 37% of babies have been exposed to multiple episodes of binge drinking (5+ drinks per session) during pregnancy. An additional 42% have been multiply exposed to 1 to 4 drinks per session during pregnancy.

Prenatal alcohol exposure has been linked to more than 60 disease conditions, birth defects and disabilities. Damage is a diverse continuum from mild intellectual and behavioural issues to profound disabilities or premature death. Prenatal alcohol damage varies due to volume ingested, timing during pregnancy, peak blood alcohol levels, genetics and environmental factors.

Cascade For example, ethanol interacts with over 1000 genes and cell events, including cell signalling, transport and proliferation. Alcohol supresses serotonin production. Serotonin suppression causes loss of neurons and glia, inducing excessive cell death during normal programmed death (apoptosis) or triggering apoptosis at inappropriate times leading to smaller or abnormal brain structures with fewer connections between brain cells, leading to fewer cells for dopamine production, leading to problems with addiction, memory, attention and problem solving, and more pronounced conditions such as schizophrenia.

Approximately 20% of Canadian school age children are receiving special education services, most for conditions of types known to be caused by prenatal alcohol exposure.

As FASD is a diverse continuum, issues range from almost imperceptible to profound. It is somewhere in the middle that the issues attract the attention of parents, educators, medical and social work professionals, and eventually the justice system. Most of the issues that attract sufficient attention are behavioural and performance issues.

It is probable that 10% to 15% of children are significantly enough affected by prenatal alcohol exposure to require special education. As they become adults, FASD does not disappear but the issues of youth translate into ongoing problems in family relationships, employment, mental health and justice conflicts. The cost to the individuals affected, their families and society are enormous and as a society, we cannot afford to ignore them.

To ignore the facts does not change the facts.

More ....

Video Presentation to the Legislative Assembly of Ontario, Standing Committee on Social Policy, Bill 118, Accessibility for Ontarians with Disabilities Act

Introduction to Fetal Alcohol Spectrum Disorders (PDF) Document prepared for the above presentation.

FASlink PowerPoint FASD Presentation provides and overview of FASD. 8 MB download.

Legally intoxicated is defined as a Blood Alcohol Level of .08%. A 100 lb (45 kg) female consuming 5 standard drinks will reach a BAL of .25% - three times the legal limit. BAL reduces .01% per hour.

FASlink CD - more than 200 MB of information.

The FASlink CD is an extensive collection of key articles about FASD. It is sent as a Thank You for a donation of $20.00 or more to FASlink. Click on the image above or click here to donate.

FASlink is funded through voluntary donations. We depend on you for being able to continue our services. To assure our editorial integrity and independence, FASlink does NOT accept any funding from the beverage alcohol industry.

Need a speaker?

FASlink's Moderator, Bruce Ritchie, is available to speak at events, seminars, and conferences.

After 4 months and 22,000 km, Bruce has returned from the Great Ride Across Canada.

The Great FASD Horseback Ride Across Canada

The Great FASD Horseback Ride Across Canada has completed the 2007 Atlantic to Pacific journey. The journey covered some 22,000 km round trip over 4 months, involved hundreds of people, shared knowledge among hundreds of people and made thousands of people more aware of FASD. There were many organized public and private events and hundreds of teaching moments on the trek. more ....

NS NB

Margaret Sprenger and Bruce Ritchie received the St. Michael's Hospital "Award for Pioneer Work in the Area of Fetal Alcohol Spectrum Disorders".

Click to enlarge
Mary Cunningham, Ernie Parsons MPP, Margaret Sprenger, Bruce Ritchie

"St. Michael's Hospital, Fetal Alcohol Spectrum Disorder Clinic is pleased to support the work of FASlink. St. Michael's FASD Clinic views FASlink as an essential service for our clients. We are fortunate to partner with FASlink in our attempt to improve the lives of individuals and their families with FASD. Dr. Brenda Stade, St. Michael's FASD Clinic" St. Michael's Hospital is a teaching hospital affiliated with The University of Toronto.
FASD Diagnostic Clinic - Booking Office: (416) 867-3655

Who are we? Our roots go back to 1991 as the Fetal Alcohol Support Network, formed by a group of parents who were struggling with the lack of professional knowledge and supports in the FASD field. FASlink began online as a FASD discussion forum in 1995. In 1999 FASlink was merged with the FASN website under the direction of Bruce Ritchie and the combined name became FASlink Fetal Alcohol Disorders Society. FASlink's website contains more than 130,000 searchable FASD related documents and serves more than 400,000 visitors annually. The FASlink Discussion Forum shares 50 to 100 letters daily and compiles the papers and discussions into the FASlink Archives. Our membership is worldwide but most are in Canada and the USA, from the most remote locations to urban centers. You can join the FASlink Discussions.(.....more)

Effective interventions to reduce health problems related to prenatal alcohol consumption: (Summary)

Medical Education

Teach physicians and other health professionals to screen, diagnose and treat FASD.

Recognize and deal with the continuum, not just the extremes of FASD.

Actively screen for alcohol use in all patients and give advice.

Recognize medical issues of alcohol and all personal, family and societal ramifications.

Folic acid should be added to all beverage alcohol.

Break the cycle. Properly fund addiction intervention and rehabilitation programs. Treat the entire family to help prevent relapse.

Identify women at risk of having children with FASD and intervene.

Meconium testing for Fatty Acid Ethyl Esters should be mandatory for every birth.

Intensive family and social service supports for FASD and recovering alcoholics.

Poverty is a result of, and breeds, substance abuse. Deal with it.

The beverage alcohol industry pays less than 1% of the total damages caused by their products. Increase taxes on beverage alcohol.

All tax revenue to be returned to support rehabilitation programs and victims of alcohol.

Remove all incentives for governments to promote alcohol.

End all government supports for beverage alcohol industry, including "wine and beer tourism".

End all alcohol advertising.

Alcohol must be served with food.

Breathalyzers in all alcohol establishments.

Ban alcohol sales incentives, contests, games.

Ban "Happy Hour" discounted promotions. They encourage binge drinking.

Public Education

Educate the public that addiction is a medical issue not a moral failure.

Educate children from a very young age about dangers of alcohol.

Have youth design anti-alcohol programs targeting youth.

Better diagnostic tools for the full range of FASD damage.

True incidence and scaling of FASD damage.

Chemically turn-off addiction center in brain.

"Formic Acid in the Drinking Patient and the Expectant Mother" by Dr. Bhushan Kapur.

Methanol in small amounts is present along with ethanol in beverage alcohol. The body's natural enzymes preferentially metabolize ethanol while methanol breaks down into highly neurotoxic Formic Acid. Formic Acid is best known in the venom of bee and ant stings.

Use of high levels of Folic Acid was found to inhibit brain damage caused by the methanol.

The use of Folic Acid during pregnancy has been recommended for several years to prevent neural tube defects. However, this study indicates that even higher levels of Folic Acid can be very beneficial to the developing baby, particularly where alcohol exposure is a factor. Since 1997, Folic Acid has been mandated as an additive to all flour sold in Canada. The debate has begun on its required addition to all beverage alcohol to help mitigate damage caused to both infants and adults.

Screening for prenatal alcohol exposure.

Meconium is the first fecal excretion from the newborn baby. MecStatSM EtOH is a test of the non-oxidative metabolites of Ethyl Alcohol called Fatty Acid Ethyl Esters (FAEE’s). These metabolites are the chemical combination for endogenous fatty acids present in the blood of a fetus and Ethyl Alcohol. These new compounds, which only form when the fetus is exposed to Ethyl Alcohol, are deposited into the fetus’s meconium and can then be detected and quantified from the newborn’s meconium after delivery. The amount of the Fatty Acid Ethyl Esters found in the meconium is representative of the amount of Ethyl Alcohol the fetus was exposed to during the last half of the pregnancy.

Studies by United States Drug Testing Laboratories (USDTL) and its dba MecStat Laboratories using the MecStat-ETOH meconium testing for FAEE's have shown 15% to 18% of newborns have been exposed to significant levels of alcohol in the final 20 weeks with 4% having been exposed to very high levels of alcohol. This test has become the de facto standard for laboratory diagnosis of fetal alcohol exposure and is in routine use all over the United States and Canada. Courts have held that MecStatSM EtOH tests meet both the Fry and Daubert standards and the results are admissible in adversarial proceedings.

A confirmation study: "Neonatal Screening for Prenatal Alcohol Exposure - The Grey Bruce Study" by Joey Gareri, HBSc, MSc student was presented at the St. Michael's Hospital 2005 FASD Conference. The FAEE study, found a high level of exposure in 4% of newborns.

Why test for fetal alcohol exposure when there is no treatment available?

There are several reasons why diagnosis of alcohol exposure is important. As with any disease, early diagnosis provides for many more options and treatments than detection at an advanced stage.

a. Early diagnosis of fetal alcohol syndrome (FAS) and fetal alcohol effect (FAE) allow newborns to be identified and enrolled into early intervention and treatment programs. New programs are showing dramatic improvements in children identified earlier in life.

b. Detection of an alcohol affected child can allow help, intervention and treatment to be offered to the mother, so that future FAS and FAE children may be prevented.

c. When cocaine and opiate exposed newborns were first detected, there was no treatment. As programs, understanding and treatments improve, diagnosis at a very early stage can only help the outcome of the child, mother and family.

Meconium testing should be part of the standard testing protocol for all newborns. "Results of meconium tests offer a unique opportunity to record gestational exposure to ethanol. Missing this opportunity can leave many children impaired by alcohol at risk of being undiagnosed: evidence of maternal drinking is a prerequisite for diagnosis of fetal alcohol spectrum disorder in cases where pathognomonic facial features are not apparent."

The child has the right to honest diagnostic information that has not been corrupted by ego, social stigma or threats by the medical profession's insurance agencies.

"People may not see FASD when they look at my son's face, but I see it. I see it in the way his eyes flash in anger when he is frustrated and I see it in the tears that pour down his face when he is trying so hard to understand his math problems. I see it in his blank stare when he shuts down after working so hard in school all day, a place that has labeled him as lazy and defiant, and I see it in his silly smile when he is being impulsive or inappropriately friendly with strangers.

"FASD is also visible on my face and on the faces of other moms and dads...it is spelled out in worry lines. For some it is in the tears that flow in overwhelming grief. These are the facial features of FASD that do not appear on the FAS diagrams. FASD is often called the invisible disability, but I see it everywhere I look...and it doesn't go away just because I close my eyes."

Kari Fletcher, Adoptive Mom to 2 children with FAS and advocate/trainer at MOFAS, the Minnesota Organization on Fetal Alcohol Syndrome

"FAS represents the largest environmental cause of behavioral teratogenesis yet discovered and, perhaps, the largest single environmental cause that will ever be discovered." -Riley, E. P., and Vorhees, C. V. (1986). Handbook of Behavioral Teratology. Plenum Press, New York, NY\

"Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus." -Institute of Medicine 1996 Report to Congress

"Alcoholism should not be judged as a problem of will power, misconduct, or any other unscientific diagnosis. The problem must be accepted for what it is - a biopsychosocial disease with a strong genetic influence, obvious signs and symptoms, a natural progression and a fatal outcome if not treated". Thomas R. Hobbs PhD MD - Physician's News Digest of Feb. 1998

The World Health Organization's "WHO Global Status Report on Alcohol 2004 - Health effects and global burden of disease" states, "Alcohol use is related to wide range of physical, mental and social harms. Most health professionals agree that alcohol affects practically every organ in the human body. Alcohol consumption was linked to more than 60 disease conditions. In the developed countries, 9.2% of all the disease burden is attributable to alcohol, only exceeded by the burden attributable to tobacco and blood pressure."

Financial security, succession planning

One of the greatest concerns for parents of children with any disabilities is "What happens after I die?" "Who will look after my disabled adult child for his/her lifetime?" "How can I preserve my few remaining assets so my child can benefit and governments won't relegate them to abject poverty or life on the streets?"

For example in Ontario, ODSP is not available until the disabled individual's assets drop below $5,000 and then the maximum ODSP payment is $11,160 per year. That is reduced by 24% if the disabled individual lives with a family member. So if there are any family assets inherited, they have to be completely used up before the disabled individual is entitled to any government support, far below the poverty line. This, of course, is very distressing to the parents who have spent a lifetime trying to protect their child.

These concerns place tremendous emotional pressure on our families. Disabilities mean high needs dependents and often mean one parent must drop out of the work force, perhaps losing $30,000 to $60,000 or more annually from the family resources.

Disabilities also cause enormous stress on marriages and lead to marital breakdown and single parenthood with its attendant heightened emotional and financial stresses. In Ontario 85% of support orders are in default. If you can't support one household on the available income, how can you support two? Disabilities often mean complete destruction of the family finances, no retirement pension, stress-related / distress-related physical and mental illnesses of the caregiver and the dependent.

When the parents are going through excessive stress, that can reflect back on the child and amplify the child's problems. For example, it can be highly stressful to have to battle bureaucrats to obtain the services to which your child is entitled. It is even a struggle to find out what services are available. They tend to be well kept secrets.

Demonstration