© Ric Ernst, PNGDr. Kwadwo Asante (center) and executive director Audrey Salahub (right) consult with a patient at the Asante Centre for fetal alchol syndrome in Maple Ridge October 28, 2010.
Throughout his rounds in northern B.C. and Yukon, the soft-spoken, congenial physician saw children who were not growing properly.
"Failure to thrive" was the medical term he wrote on the charts. What he didn't know was why.
Could it be genetic? Did they have kidney or heart problems? Was it a result of chronic diarrhea?
One preschool boy was so tiny for his age, Asante had him flown to BC Children's Hospital in Vancouver. And it was only then the mystery of the small children of the north was answered.
A Vancouver doctor called Asante to tell him the boy likely had fetal alcohol syndrome. It was one of the first times the term was used to describe the disability affecting children whose mothers drank alcohol during pregnancy. Similar to how paint stripper works on old furniture, the alcohol consumed by their mothers effectively bubbled away or dissolved their unborn child's brain cells. The result? Brain functions missing in children, leaving them with a lifelong, largely invisible physical disability.
The brain damage varied in the children. It depended on the severity, timing and duration of the mother's drinking as well as her age and genetics.
Babies born to mothers who drank in the first trimester, when the unborn child's face is formed, had physical signs, like cleft lips and palates.
On a more precise scale, if a woman drank between days 18 and 21, her children were born with the classic FAS facial characteristics, often referred to as the face of fetal alcohol syndrome.
A "light bulb" went off in Asante's mind. He had seen that face many times.
"They had small eye openings, thin upper lips and a flatness in the groove between the nose and lip," he said.
Asante connected the dots between what the doctor in Vancouver told him about the boy and an article he had just read in a medical journal from Seattle -- one of the first to report on this newly named syndrome.
Dangers of Drinking
Asante went on to become one of the first pediatricians in Canada to formally diagnose FAS in children in B.C., and was often sought out by parents desperate for answers on what was wrong with their children.
In 1985, Asante wrote the ground breaking Report on the Survey of Children with Chronic Handicaps and Fetal Alcohol Syndrome in the Yukon and Northwest British Columbia. After his paper was published and news spread about this newly named disability, Asante assumed the problem would end.
FAS was entirely preventable. All doctors and government health authorities had to do was get the word out about the dangers of drinking during pregnancy. Or so Asante thought.
"What I didn't factor in was the question of addiction. There are some people who could not kick their habit easily," he said.
The problems associated with FAS were far more devastating than the physical manifestations Asante first observed.
As they grew older, the children exhibited poor judgment, impulsivity and had difficulty thinking rationally. They couldn't learn from their experiences, couldn't understand consequences of their actions and had learning disabilities. They failed at school.
The average IQ for full fetal alcohol syndrome is 74 while the average IQ for fetal alcohol spectrum disorder, the diagnostic label for people who have any alcohol-related disabilities, is 90. The average IQ is a score of 115 to 124 -- and while people with FAS can also have a normal IQ, they would still show significant impairment in memory, judgement and adaptive living skills.
They often suffered from depression, were socially isolated and developed substance abuse problems.
Many landed in jail. (Even today, American research shows that a seven-year-old diagnosed now with FASD has a 50-per-cent chance of entering the correctional system, according to researcher Larry Burd, director of the North Dakota FAS Center.)
In 2010, 35 years after Asante's first diagnosis of FAS, the disability continues to be very much evident in communities, not only in the north, but throughout B.C., Canada and internationally. Anywhere where alcohol is available, some pregnant women -- or women not aware they are pregnant -- will drink, and children continue to come into this world with an entirely preventable disability.
It is not known exactly how many Canadian children have FASD. However, based on research in the United States, where approximately nine out of 1,000 people have FASD, Health Canada estimates there are about 334,000 Canadians with the disorder.
A 2009 study estimated the annual cost of the disorder in Canada at $5.3 billion, a figure that includes direct costs (medical, education and social services) and indirect costs, such as productivity. The estimate does not include law enforcement costs or the cost of incarceration or child protection. And a decade-old study estimated $1.5 million is the cost of one individual having FASD over their lifetime.
Although there are hundreds of thousands of Canadians with FASD, only 2,000 each year are formally diagnosed with the disorder, said Dr. Sterling Clarren, the CEO of the FASD Research Network, an organization formed five years ago when the four western provinces and the three territories decided to pool their resources to deal with this continuing health concern. The numbers are imprecise because there are so few assessment centres available in Canada to conduct a full diagnosis. Also, because FAS is largely an invisible disability, it's not always evident at birth, but when problems start showing up later in a child's life, doctors can only suspect it may be the cause.
"Since FASD is largely not diagnosed in hospitals, we can only guesstimate the numbers. The problem is, if you can't prove it's a problem, you can't build capacity [to deal with it]," said Clarren, who is one of three principal investigators with NeuroDevNet, a recently established National Centre of Excellence in developmental disabilities, based at the University of B.C.
Diagnosis is Critical
Clarren said it's critical for people with FASD to be diagnosed in order for them to access services and to get the help they need to live healthy, productive lives.
"We don't have obvious road maps of successes," said Clarren. "Success for a person with mobility issues isn't about getting out of a wheelchair; it's adapting to being in a wheelchair."
The same is true for people with FASD, he said. The disability will remain with them forever but "with structure, support and guidance, we can help them live independently."
Now in their 30s and 40s, those among the first to be diagnosed with FAS grew up at a time when little was known about their disability. Their families and caregivers despaired at the seemingly irrational behaviours.
Society wrote them off as behavioural problems. And while understanding of this brain-based disability has improved greatly for FASD children today, their lives are still difficult and often tragic.
At middle age, a time when most people are settled, working and having children, many people with FASD are falling through the cracks. They can end up homeless, poor, in jail or dead because they are natural risk takers due in large part to their inability to stop to think of the consequences of their actions.
And in another worst-case scenario, the cycle is repeated. FASD mothers drink during pregnancy and in turn have children bearing the same syndrome.
There have been few studies of FASD and the law, but Burd said he would conservatively estimate 15 to 20 per cent of Canadians in jail have FASD, while other researchers have estimated it could be as high as 50 to 60 per cent of the prison population.
"The problem is there is no screening capacity and opportunity for diagnostic assessment in the corrections system," said Burd, adding if they were screened he suspects "the system would be quickly overwhelmed" by the cases.
One of the few Canadian studies on the subject was done in 2009 when a Justice Department report noted slightly more than one in 10 youth involved in the justice system were either suspected or confirmed to have FASD. About 14 per cent of young aboriginal accused whose cases were reviewed were either confirmed or suspected of having FASD, compared to 0.2 per cent of non-aboriginal accused. It's no surprise when one of the common characteristics of FASD is an absence of impulse control.
Those who do well usually have someone who is providing support to them. They can become successful in many jobs that offer concrete, learn-by-doing opportunities and have employers who have an understanding of the disability.
But even in these success stories, the person still needs a network of support. They might need help with money management and either constant or periodic guidance on how to stay out of harm's way. But for so many people with FASD, by the time they reach adulthood, they've alienated family members and friends and are on their own trying to cope with limited skills. They don't do well generally in society and are often easy marks for victimization.
The government has recognized it has a role to play in helping individuals with FASD live with their disability and a role in stopping more FASD births.
Education is Key
B.C. has a strategic plan to guide provincial, regional and community efforts to address FASD over the next decade. Its goals: educate women about the risk of alcohol and substance abuse during pregnancy, intervene and support pregnant women and mothers with a drinking problem and provide access to diagnosis and assessment for children, youth and adults suspected of having FASD.
Under the plan, the Ministry of Health increased its capacity to carry out assessments, the Ministry of Education created a provincial outreach program to educate teachers about teaching students with FASD and the Ministry of Children and Family Development began providing a support worker to families to help their children with FASD.
Since 2006, the Ministry of Children and Family Development budget doubled from $2.7 million to $5.4 million in order to help FASD children. One of its most successful programs has been the Key Worker and Parent Support Services program, which has a case load of about 2,000 children and youth diagnosed with FASD. Under the program, a specialized worker is assigned to work individually with a child to help families access services in community and at school.
However, supports for adults with FASD are almost nonexistent.
Adults fall under Ministry of Housing and Social Development, which only recently created a specialized assistance program. If an adult is lucky enough to have a formal diagnosis of FASD, he can apply for the $950 monthly disability cheque -- which critics say is far from sufficient to live on let alone to pay for outside help to meet the daily needs of people with FASD.
One new program recently launched by the ministry is providing additional financial assistance. The Personal Support Initiative, overseen by Community Living B.C., has a $10-million annual budget to provide support to individuals throughout the province. In addition to people with FASD, this funding would also cover people with pervasive developmental disabilities, like autism. But there must be a formal diagnosis and significant limitations in daily living to qualify.
"We're the first jurisdiction in Canada to offer targeted services," said Minister of Social Development Kevin Krueger, adding that while B.C. recognizes it's important to be testing adults, only a small number have been identified since the program began last February.
"We've identified a total of 170 people and some are in the process for assessment," he said.
To date, of the 113 adults who have been eligible to receive the additional funding, 22 have FASD, 87 have autism and four individuals have both autism and FASD. The adults with FASD getting additional funding are the most severe cases, said psychologist Douglas Lee, who runs a private behavioural consulting company that supports people with brain injuries.
Even with this new initiative, the most an individual usually can receive is about $10,000 per person, not enough to provide the necessary high level of support, he said.
The Asante Centre, which offers diagnosis, assessment and support services to people with FASD, is able to get government contracts to help children and youth. Not so with adults.
The cost for an assessment can range from $2,000 to $5,000, so very few adults have the financial means to get this formal diagnosis -- seen as a necessary first step in order to access services.
Asante Centre executive director Audrey Salahub said while great strides have been made for children, there's very little for adults.
"There's always jail for a client -- that's the place that will provide them with a free room and board."
What are FAS and FASD?
Fetal Alcohol Syndrome (FAS): First diagnosed in 1973. A disability affecting people who were exposed to alcohol in the womb. Common facial deformities are a thin upper lip, short eye slits and the lack of a ridge between the nose and upper lip. Individuals with FAS may be impaired in three or more areas of the central nervous system. Those impairments could be in brain structure, cognition, communication, academic achievement, memory, abstract thinking, attention deficit/ hyperactivity or social skills.
Partial Fetal Alcohol Syndrome (pFAS): Same as above, only having two facial characteristics.
Alcohol Related
Neurodevelopmental Disorder (ARND): People with ARND do not have facial characteristics associated with FAS or partial FAS, but still have significant brain injury as a result of confirmed prenatal alcohol exposure.
Fetal Alcohol Spectrum Disorder (FASD): A term widely adopted in 2003 to describe all alcohol-related disorders, including FAS, pFAS and ARND.
Behaviours associated with FASD include:-
- Poor executive functioning, which may include difficulty planning, organizing, prioritizing and following through with tasks, being on time and sticking to a schedule.
- Impulsivity and may be over-reaction to stimulating environments.
- Often repeating the same mistakes because they don't learn from past behaviours.
- Poor memory or an inconsistent memory, which is hard for teachers to understand because they might perform well on Monday but forget on Tuesday. Math and science are hard subjects to grasp, money management is a challenge.
- Frequent inability unable to make decisions or understand risks. While they often have good expressive skills, their receptive skills are weak so while they are nodding and pretending they understand, they might not. Often will say what he or she thinks you want to hear, thinks more slowly, gets "stuck" in rigid behaviour and has trouble changing gears stepping from one activity and starting another.
- Often functioning developmentally -- socially, emotionally and cognitively -- at half their chronological age. Tend to mature and "catch up" as much as they are going to by age 35, so will need support.
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