(This is the second installment in a three part series. You can read part 1 here.)
A few months back, the general business of being a school teacher led me to wander into a colleague’s classroom, where I happened upon a rather agitated student. What struck me in the moment wasn’t the way the child was acting, but how they looked. For all intents and purposes the child possessed facial features that I had learned years before meant they could have Fetal Alcohol Spectrum Disorder. (FASD)
FASD is a condition that occurs when a fetus is exposed to alcohol. There is no precise understanding of how much (or how little) alcohol causes the onset, and the condition presents with a wide range of symptoms including learning difficulties, challenges with regulating emotions, and difficulties in managing behaviour.
It occurred to me that I had heard little about FASD over the course of two decades of teaching in Nova Scotia; a stark contrast to my experience in Saskatchewan (almost twenty-five years before). There FASD training was a regular component of professional development for educational staff. I found myself wondering why FASD had seemingly disappeared from the Nova Scotian educational lexicon.
Answering that question took me first to the Canada FASD Research Network, where Executive Director Audrey McFarlane opened my eyes to some striking realities. FASD, she explained, was one of the leading causes of developmental delays in children in all of the western world. In fact, conservative estimates place the incidence of FASD at 4%, which is higher than the incidence of Cerebral Palsy, Tourette’s Syndrome, Down Syndrome and Autism combined.
When I admitted my ignorance of these numbers, MacFarlane was not surprised. She said that the general pattern in Canada was that the farther East one travelled, the less people were talking about FASD. The one outlier she identified was New Brunswick, where there is a “world class” institution dedicated to helping families cope with FASD.
On that recommendation, I contacted Annette Cormier, Provincial Program Manager for the NB FASD Center of Excellence. I asked Ms. Cormier how her province managed to open a clinic where none existed here in Nova Scotia. She explained it had taken many years and a good deal of lobbying to make the opening of the clinic a reality in 2012.
“Before that lots of kids were struggling. Many kids were being misdiagnosed. For example, kids would get a diagnosis of autism, and interventions would be put in (place) for that. But those interventions do not work for FASD.”
The clinic currently services over eight hundred New Brunswick families. According to Cormier, it receives eight to ten referrals every month, and takes on over one hundred new clients every year. Even with those numbers, Cormier admits they are not reaching everyone.
“Just think about the statistics… based on prevalence and number of births, we should be diagnosing 250 new cases in New Brunswick every year.”
I asked Cormier why she felt people were reluctant to seek help, and she pointed to the stigma still attached to the condition. Although there are, as I had recalled, some distinct facial features associated with the syndrome, these occur in less than ten percent of cases. In the absence of these markers, it falls on the mother to disclose their alcohol use to their health care provider; a disclosure that carries with it a great deal of “blame and shame” from the broader society. This is one of the reasons why professionals like Cormier feel education about FASD is so vital.
Consider the story of Nadia Mallet, a mother of an FASD child who tells her story on the NBFASD website. Nadia and her partner struggled for years to understand their son’s emotional instability and violent outbursts. They tried psychologists, behaviour specialists and even medication, with little success. It wasn’t until their child was thirteen that a psychiatrist suggested FASD to the family.
Nadia had not considered this possibility because she had abstained from alcohol once she found out she was pregnant. She did not, however, discover she was carrying until eleven weeks. She went out for drinks exactly twice between conception and the positive pregnancy test, once at eight weeks and once at ten. By the time she found out she was going to have a baby, however, FASD had already developed in the child.
This is not an uncommon story. Many families do not discover their pregnancy until well into the first trimester. Unfortunately, it is during this time that the fetus is most vulnerable to the impact of alcohol. Furthermore, there is currently no measure of how much alcohol can result in FASD. Innocently going out for a few drinks to celebrate an anniversary or lighting up the town on New Years Eve with loved ones is hardly a crime. If the result is a child with FASD, however, stigmatization of the mother is almost automatic.
“What people don’t always understand” Cormier explained, “is how dangerous alcohol can be. They just don’t know about FASD, and if they don’t know about it, they don’t talk about it “
Without a diagnosis, children with FASD face a bleak prognosis for their future. Incidence of incarceration, substance abuse and suicide among the FASD population is quite high, resulting in an average life expectancy of only 34 years. Cormier was quick to follow that with a hopeful qualifier, however, indicating that these results need not be a foregone conclusion.
“With early identification, and proper accommodation, and FASD informed professionals our kids actually can become quite successful. The key element is early identification and proper accommodations.”
The Center, which is funded by the New Brunswick Department of Health, is currently in the process of launching its five year strategic vision, which it hopes will include an Interministerial partnership. Once formed, this partnership will require all levels of government to be accountable for FASD in their respective field.
It is that breadth of impact that is one of the most striking aspects of this condition. Whether it be within education, within healthcare, or within the courts, people with FASD often face insurmountable barriers when attempting to navigate systems that many of us find commonplace. Those barriers result not only from the individual having the condition, but from the lack of understanding about FASD that exists within those systems themselves.
Nadia Mallet was fortunate in a number of ways. She was financially stable enough to take time off work to help her son through some of his hardest moments. She is well educated, articulate and obviously more than capable of some pretty fierce advocacy. Most importantly, she lives in New Brunswick, and is able to access all the supports and services provided by the Center of Excellence.
But what about families in Nova Scotia? Where do our 40,000 or so citizens affected by FASD go for help?
In the final installment of this series, we will examine the reality of living with FASD in our province, and what needs to be done to move all of us forward.