This chapter draws on the testimony and briefs received by the Committee to provide an overview of the complex issue of FASD. It begins with a basic description of FASD and its underlying causes, and goes on to discuss identification and diagnosis, and the many problems suffered by people with FASD.

2.1 WHAT IS FETAL ALCOHOL SPECTRUM DISORDER?

FASD is a non-clinical term that refers to a range of cognitive deficits and other disabilities caused by prenatal alcohol exposure. It is an incurable and entirely preventable condition. Prenatal alcohol exposure is the main known cause of birth defects and non-genetic developmental disability in Canada.[14] As the condition is irreversible, most people with FASD will require health, educational and social services throughout their lives.[15]

FASD encompasses five medical diagnoses:[16]

• fetal alcohol syndrome (FAS);
• partial fetal alcohol syndrome (pFAS);
• fetal alcohol effects (FAE);
• alcohol-related neurodevelopmental disorder (ARND);
• alcohol-related birth defects (ARBD).

FAS is probably the most widely recognized diagnosis. The term “fetal alcohol syndrome” first appeared in 1973 in an article that presented abnormalities observed in children whose mothers abused alcohol during pregnancy.[17] The article provided a description of the main characteristics of FAS: craniofacial abnormalities, growth deficiency and central nervous system dysfunction. Over time, other terms were proposed to address other signs of prenatal alcohol exposure. Researchers also discovered that cognitive disabilities related to fetal alcohol exposure can occur without any morphological abnormalities. It is now known that FAS represents only the tip of the iceberg when it comes to the range of impairments caused by prenatal alcohol exposure.[18] Since the 2000s, the preferred term in North America to describe the spectrum of disorders caused by alcohol use during pregnancy is “fetal alcohol syndrome disorder” (FASD).

Most FASD victims demonstrate no craniofacial abnormalities. The Committee learned that such facial features are found in fewer than 10% of cases.[19] Research also shows that the facial features are likely to change or even disappear with age. According to a study conducted in the 1990s, “only 10% of their original diagnosed group continued to have clearly recognizable features of FAS.”[20]

As we will see later, the victims of fetal alcohol exposure present a unique combination of symptoms that have varying degrees of severity on the fetal alcohol spectrum. According to the experts who appeared before the Committee, research has shown that FASD is not influenced solely by alcohol consumption during pregnancy but also by the interaction of genetic factors (e.g., the resilience of the fetus) and postnatal environmental factors (e.g., inadequate nutrition, an environment unsuitable for child development). This interaction and the fact that FASD symptoms are similar to the symptoms of other disorders make it very difficult to identify people affected by FASD.[21]

2.2 IDENTIFICATION AND DIAGNOSIS OF FASD

In 2005, the Canadian Medical Association released Canadian guidelines for diagnosing FASD.[22] As stated in the paper, “[t]he guidelines are based on widespread consultation of expert practitioners and partners in the field.”[23] The Scientific Director of the Society of Obstetricians and Gynaecologists of Canada informed the Committee that updated guidelines will be published shortly.[24] Revision of the guidelines was made possible through funding from the Public Health Agency of Canada[25]. The new guidelines will “talk a little bit more about screening and how to recognize when alcohol use during pregnancy may be a problem.”[26]

Diagnosing FASD is both complex and expensive. An average assessment costs approximately $4,000 according to Dr. Gail Andrew.[27] However, experts told the Committee that the investment is worthwhile since it has been shown that providing FASD victims with the appropriate support reduces delinquency, crime, victimization and the use of emergency services, and improves quality of life.

A wide range of physical and cognitive assessments are required to screen for disorders caused by prenatal alcohol exposure. It is recommended that assessments be conducted by a multidisciplinary team made up of physicians, psychiatrists, psychologists, speech-language pathologists and occupational therapists. During her testimony, Wenda Bradley emphasized that an assessment should not be limited to a strictly psychological analysis. Instead, the assessment team should “assess all abilities or concerns for the individual with an adaptive functioning focus.”[28] Professor Pei shared this point of view and told the Committee that knowledge of a person’s unique brain functioning is vital to determining the appropriate response regarding intervention, treatment, support and sentencing.[29]

Similarly, Jocelynn Cook and Dr. Andrew highlighted the importance of diagnosing FASD as early as possible in order to identify a person’s neurodevelopmental strengths and weaknesses, and respond more effectively.[30] As Jocelynn Cook told the Committee:

We know that diagnosis improves outcomes, the earlier the better. Part of that is because people understand the implications of FASD, what it means, and we can try to develop integrated care teams to get families the supports and services that they need. Diagnosis is important. It identifies neurodevelopmental strengths and weaknesses so that we can better match … treatments and interventions.[31]

To make a conclusive diagnosis, it is always preferable to have evidence that the mother consumed alcohol during pregnancy. However, FAS can be diagnosed without such confirmation when the individual exhibits facial anomalies (e.g., thin upper lip and a flat midface), growth deficiency and abnormal development of the central nervous system (e.g., poor fine-motor skills or hand-eye coordination).[32] Individuals with only a few of the facial features but with neurocognitive dysfunction are diagnosed as having partial FAS, and those with none of the FAS facial features but with significant neurocognitive dysfunction are diagnosed as having ARND. That said, for a diagnosis of pFAS or ARND, there must be a confirmed history of alcohol use during pregnancy.[33] By definition, anyone who receives an FASD diagnosis has deficits in several areas of cerebral functioning.

Witnesses raised the issue that proof of prenatal consumption of alcohol is required for a diagnosis of FASD. Sometimes this information is simply unavailable, as in the case of a child who has entered the child protection system and has no contact with his mother, or whose mother is deceased. In other cases, given the stigma associated with FASD, the mother, a family member, an acquaintance or another individual may simply deny there was any exposure to alcohol during pregnancy. Without a diagnosis, some individuals who present various symptoms of FASD may be denied the services given to others who have been formally diagnosed.[34]

The Committee learned that Canada has some screening tools and that steps are being taken to get doctors across the country to “collect the same data when they assess their patients for FASD, whether they have it or not, and to say what they recommend in terms of supports and systems.”[35] Significant progress has been made in this regard in Yukon, where the Department of Justice has announced that it will collect standardized data to identify trends and better evaluate the impact of FASD on the demand for and delivery of services.[36] 

In its brief to the Committee, the FASD E.L.M.O. Network stated that, in too many instances, FASD is considered only after an individual has received multiple diagnoses and ineffective interventions. The Network is concerned about this situation and emphasized that consistency is critical to positive child development.[37]

Several witnesses stated that many Canadian communities have limited diagnostic capacity. It was suggested that services vary tremendously across the country and that there are generally more diagnostic clinics in Western Canada. In addition, adults seem to have less access to diagnostic services than children.[38]

Poverty – which is often characterized by limited access to social and health services – and stigmatization are also key factors that can make identification and prevention of FASD much more difficult. Because of the prejudices surrounding FASD, witnesses suggested that some people with FASD feign understanding in their dealings with frontline workers so that they can avoid detection.[39] Women who are pregnant or trying to conceive may deny having a drinking problem – again to avoid the stigma associated with alcohol use. Jocelynn Cook talked to the Committee about FASD prevention and efforts to address the issue of stigma:

We're trying to change the stigma around alcohol use in pregnancy so there's not the shame and blame context. We're hoping that women are becoming more comfortable talking about alcohol use. We're doing a lot of education so that everybody understands the potential implications of alcohol use during pregnancy. We're working a lot with health professionals and front-line workers so that they know how to talk to women about alcohol use, because there's an art to that and there's a relationship piece to that.[40]

2.3 THE MANY DISABILITIES RELATED TO FASD

The victims of fetal alcohol exposure experience a range of impairments. Fetal alcohol spectrum disorder implies that it affects people to different degrees and produces symptoms of varying intensity. It also implies that people with FASD require different types and levels of support. Witnesses frequently told the Committee that no two people are affected by FASD in the same way.

The severity of the effects of FASD depend on a variety of factors such as the amount of alcohol consumed during pregnancy, the mother’s consumption patterns, the timing of exposure during pregnancy, genetics, smoking, drug use, stress and trauma as well as the mother’s age, health and overall nutrition.[41] Postnatal factors such as the child’s nutrition and socioeconomic environment also influence the severity of impairment.

Prenatal exposure to alcohol affects individuals in many ways and is unique to each individual.[42] The experts who appeared before the Committee explained that fetal alcohol exposure can result in primary and secondary disabilities. Primary disabilities are the direct result of the damage caused by alcohol to the brain and central nervous system, while secondary disabilities develop in cases where affected individuals do not receive proper support. Recent Canadian studies indicate that individuals with FASD had more central nervous system impairment than anticipated.[43] This finding is troubling because nervous system impairment increases the risk of developing secondary disabilities.

The table below presents some of the primary and secondary disabilities frequently linked to FASD.

Dr. Svetlana Popova, a professor and senior scientist in social and epidemiological research at the Centre for Addiction and Mental Health, spoke to the Committee about research findings that reveal the many disabilities affecting people with FASD:

[A]bout 90% of people with FASD have conduct behavioural problems, disruptive behavioural impulsivity. Also, 80% of people have receptive and expressive language deficit, 70% have developmental and cognitive disorders and developmental delays, 55% have alcohol and drug dependence, 50% suffer from attention deficit hyperactivity disorder, and 45% from brief psychotic disorder. More than 40% have fine and/or gross motor developmental delays and developmental coordination disorder. More than 40% have mental retardation and intellectual impairment. More than 40% have major depressive disorder.[44]

People with FASD commonly suffer from other co-morbid conditions that affect their disabilities such as psychoactive drug use, anti-social personality or conduct disorder, and anxiety – any of which can complicate the task of the people trying to help them. During her research, Dr. Popova found that more than 400 disease conditions are related to FASD.[45] As a result, FASD appears to be “the highest input factor in the medical field.”[46] The most prevalent disease conditions identified among people with FASD are congenital malformations, followed by mental and behavioural disorders. According to research by Professor Jacqueline Pei, 95% of people who suffer from FASD have been diagnosed with mental health problems such as anxiety, depression and schizophrenia.[47]

In her brief to the Committee, Professor Pei stated that disrupted brain development is one of the primary features of FASD.[48] This disruption affects the development of memory, abstract thought, emotions and social behaviours. People with FASD may have difficulty processing information, understanding social norms and expectations, and making the connection between cause and effect.[49] The following information provided by Professor Pei illustrate these difficulties well:

In particular, individuals with FASD struggle with higher-level tasks relying on complex Executive Functioning (EF) skills including inhibition, decision-making, working memory, integration of information, and cognitive flexibility. Research with youth has found that those with FASD show impairments on decision-making and risk-taking tasks and, relative to individuals without alcohol exposure, they appear unable to change their behaviour and make more positive choices when faced with negative consequences. Rather, they seem to focus on the perceived benefits of the reward instead of the potential negative consequences of the behaviour. These brain-based deficits present risk factors that necessitate support as the presence of intense emotions, illogical thoughts, antisocial urges, and anti-social associates tend to exacerbate self-regulation potential, leaving FASD-affected individuals with difficulties controlling aggression and other maladaptive behaviors.[50]

The Executive Director of the Fetal Alcohol Syndrome Society of Yukon explained how prenatal alcohol exposure affects the brain’s executive functioning and told Committee members that service providers encounter a disconnect between appearance and reality when dealing with FASD sufferers:

People who have FASD may have varying abilities for executive functioning. They may talk very well and appear to understand what you are saying but may not comprehend much of what is said. It is hard to understand that within one person there may be the ability to talk as an adult but only understand what a person in grade 4 might comprehend from that conversation. There may be delays in processing the information and also delays in responding to questions.[51]

The disabilities associated with FASD cast a shadow over its victims, affecting their interaction with the world – at home, at school and at work – and their dealings with service providers, including those in the health care and criminal justice systems. As Committee members were told during the hearings, service providers must recognize FASD symptoms to be able to provide the appropriate care and services. Unfortunately, as we will see in the next chapter, workers in the criminal justice system, like many other service providers and stakeholders, are too often distracted by the many disabilities of FASD sufferers and tend to misinterpret their behaviour “as resistant rather than as not understanding, saying that they won't instead of that they can't.”[52]

2.3.1 Risk Factors and Protective Factors

Research has shown that risk factors and protective factors can increase or reduce the severity of FASD. Dr. Gail Andrew explained that “[p]renatal brain damage from alcohol can be compounded by adverse environments experienced in the pregnancy and in the early years of life.”[53] Elspeth Ross, the Facilitator with the Fetal Alcohol Spectrum Disorder Group of Ottawa and the mother of two children with FASD, provided a list of protective factors:

• early identification and diagnosis;
• parental support;
• a supportive environment;
• a stable home;
• direct involvement with special services;
• support from a mentor;
• appropriate support for persons with FASD and their caregivers.

She emphasized that people with FASD “need … support and understanding; help navigating the system; flexibility; patience; perseverance; and hope.”[54] 

The evidence clearly showed that creating a structured and supportive environment for people with FASD plays a significant role in preventing the development of secondary conditions and involvement in the criminal justice system.

2.4 UNSAFE LEVELS OF ALCOHOL CONSUMPTION DURING PREGNANCY

The Scientific Director of the Society of Obstetricians and Gynaecologists of Canada and other witnesses told the Committee that research has not determined the quantity of alcohol that would cause damage to a fetus.[55] While some studies indicate that excessive alcohol consumption, such as four or more drinks on one occasion, could have severe effects,[56] experts agree that consuming even small amounts of alcohol during pregnancy can cause physical defects, brain injury and irreversible impairment of the nervous system.[57] As Jocelynn Cook explained to the Committee:

The important thing to know is that the brain is developing throughout gestation and is always susceptible to alcohol. We used to be able to give alcohol to mice on a certain day of gestation—just one day—and they'd be born with limb and kidney defects. You can give it on a different day and they'll have facial features. But the problem, as I said, is that the brain is always susceptible.[58]

Given that there is no safe time during pregnancy to consume alcohol and no safe amount for a mother to consume,[59] the evidence is clear: abstinence is the best option for women who are, or who may become, pregnant.[60] This is also the position of the Public Health Agency of Canada.

According to the information provided during Committee hearings, there is an increase in risky patterns of alcohol consumption among women of child-bearing age. This trend worries experts, who reminded the Committee of the harmful effects of alcohol consumption in general and especially during pregnancy.[61] The situation is made even more troubling by the fact that close to 50% of pregnancies are unplanned.[62] Jocelynn Cook emphasized that public awareness initiatives are essential in the current social context:

Drinking alcohol is sexy in a lot of ads. It's very socially acceptable. Helping women to understand not just the harmful effects of alcohol on fetal growth and development but also the harmful effects of alcohol on health in general...[63]

Based on the testimony received, certain women may be at higher risk of giving birth to children with FASD. Risk factors for prenatal alcohol exposure include lower maternal education level, lower socioeconomic status, paternal substance abuse during pregnancy, and reduced access to prenatal and postnatal care and services.^[64] Jocelynn Cook presented the Committee with a list of possible reasons why women consume alcohol while pregnant:

• alcohol abuse;
• family history of alcohol use;
• history of in-patient treatment for alcohol or substance abuse or mental health problems;
• previous birth of a child with FASD;
• lack of contraception or an unplanned pregnancy;
• physical, psychological or sexual abuse;
• low income or limited access to health care.[65]

Service providers in contact with women who are pregnant or trying to conceive must understand these factors so that they are better able to identify those women at greater risk of having a child with FASD and can take the appropriate action.

2.5 INCIDENCE AND PREVALENCE OF FASD IN THE CANADIAN POPULATION

There is no conclusive evidence regarding the prevalence of FASD in the Canadian population. The Public Health Agency of Canada estimates that FASD occurs at a rate of 1 out of every 100 live births and prevalence is between 2% and 5%.[66] According to Dr. Popova, some segments of the population are more affected by FASD, such as northern communities, where FASD prevalence can range from 2.5% to 19%. Chief Cameron Alexis told the Committee that some First Nations communities have disproportionately high rates of FASD.[67] Lastly, Dr. Popova noted that people who have been in the child welfare system[68] and the criminal justice system have higher prevalence rates than the general population. Although she acknowledged that the studies on which these rates are based have many methodological limitations, she believes that “most likely the prevalence [of FASD] is much higher in both northern communities and the general population.”[69] Dr. Popova is currently attempting to determine the prevalence of FASD in a sample of primary students. She expects to publish her findings in about a year.[70]

Jonathan Rudin, Program Director at Aboriginal Legal Services of Toronto, stressed to Committee members that “FASD is not an aboriginal issue.” He added that “[w]e do not know … the prevalence rates of FASD in the general population in Canada” and so it is “impossible to assume or to guess that those rates are higher in the aboriginal population.”[71] That was also the conclusion of the National Collaborating Centre for Aboriginal Health, which published a report in 2009 stating that “the true extent of FAS and FASD in Aboriginal and non-Aboriginal populations is not known and thus no assessment of higher prevalence is possible.”[72] The report goes on to state that “[p]ublished estimates of the prevalence and incidence of FASD and FAS are too methodologically diverse to provide the basis for Aboriginal-specific rates.”[73] 

2.6 FASD AND THE COSTS TO CANADA

FASD is a complex issue that involves significant costs for all levels of government as well as caregivers and other stakeholders. It is estimated that the costs associated with FASD range from $1.3 billion to $2.3 billion annually.[74] Dr. Popova stressed that this is a conservative estimate and the most significant component of the overall cost was that of “productivity losses due to disability and premature mortality of people with FASD.”[75] The second highest component according to Dr. Popova was the cost of incarcerating people with FASD in provincial and federal correctional system, which accounted for about 30% of the total. She noted that the cost of federal and provincial correctional services reached close to $378 million annually.[76] In her presentation, Dr. Popova noted the following with respect to the costs of FASD to Canada:

FASD affects virtually all sectors of our society. It includes direct health care costs; direct law enforcement costs, which include the police, courts, and corrections, including probation; and other direct costs, which include children in care, special education, home support services, supportive living, job skills training, social assistance, prevention and research, and many other costs. Costs also include productivity losses of parents, caregivers, and affected individuals. The costs also include intangible costs, which means the cost of pain, suffering, stress, frustration, and guilt of the mothers, which cannot be estimated in terms of money.[77]

It is estimated that each individual with FASD creates roughly $1.5 million to $2 million in direct costs to the federal, provincial and territorial governments over a lifetime.[78] This includes additional costs for education, health and other support services, but excludes the lost potential of the individual, the family and caregivers.[79] Many witnesses reported that the people who care for a child with FASD bear a heavy burden psychologically, socially and financially, as well as in their professional and marital lives.

In closing, a key point raised by experts who testified before the Committee was that a rapid diagnosis of FASD followed by appropriate interventions helps to mitigate the negative impacts of the disorder, especially the health repercussions, and thereby reduce the many direct costs to government.