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January 11, 2024

What is FASD?

FASD stands for Fetal Alcohol Spectrum Disorder; FASD is now the recommended diagnostic term.

There are two types of FASD diagnoses:

  1. FASD with sentinel facial features: small eyes, smooth philtrum (area between nose and upper lip) and thin upper lip. All three features must be present, along with atypical brain function.
  2. FASD without sentinel facial features: no identifiable facial features (as listed above) but presence of atypical brain function.

Brain function: when considering an FASD diagnosis, the assessment team looks for significant impairments in at least three of the following areas:

  1. Motor skills;
  2. Academic achievement;
  3. Language;
  4. Memory;
  5. Attention;
  6. Cognition;
  7. Adaptive behavior, social skills, social communication;
  8. Affect regulation (includes anxiety, depression and mood dysregulation);
  9. Executive functioning (judgment/planning, organization, impulse control, self-monitoring, hyperactivity);
  10. Neuroanatomy/Neurophysiology (brain structure and functioning);
  11. Sensory (not monitored to the same degree but still considered important to understanding a student's brain functioning).

Secondary behaviors or characteristics can include: fatigue (may show as over-activity, irritability, tantrums); easily frustrated; fearfulness; rigid, resistant and argumentative; aggressive; easily overwhelmed, disengaged; poor self-concept, feelings of failure and low self-esteem; isolation (few or no friends); self-aggrandizing (attempts to make self look good); disengaged, shut down; and sadness. Source: Diane Malbin (2002)

Tertiary characteristics (the cumulative effect of chronic frustration and failure, often preventable) include: school truancy and school problems; trouble at home, running away; out of control; delinquent, criminal involvement; self-harm, mental health issues; drug/alcohol problems; problems with employment; multiple diagnoses. Source: Malbin and Streissguth.

Diagnosing a child with FASD

When a child is considered as possibly having FASD, a formal assessment must take place before any diagnosis is made.

An assessment can take place only if these three criteria are met:

  1.  There are identified developmental/ learning/ behavioural concerns for the student.
  2. There is knowledge of prenatal alcohol exposure from a reliable source.
  3. The student's guardian has given consent for assessment.

Alcohol exposure is a risk but not a diagnosis for FASD.

The Manitoba FASD Centre handles referrals and makes formal diagnoses for all WSD students. They work in partnership with WSD clinicians, educators and other professionals to assess students.

The assessment team is a multidisciplinary group that includes: Manitoba FASD Network diagnostic coordinators; social workers; developmental pediatricians; geneticists; psychologists; speech-language pathologists; occupational therapists; an FASD educator; manager and administrative team.

A student's FASD diagnosis document will also include a list of the students learning strengths and interests. These can range from "good at using my hands" to "good at computer." These strengths will become part of the students' learning profile, which is a pathway the student and their support team will develop and follow throughout their school days.

The fundamental belief is that FASD students can and will learn.

"We want to work from a strength-based approach that will help the teacher plan and work best with that student," said Dorothy Schwab, an occupational therapist with the Manitoba FASD Centre. "The onus is on the adults to do the changing to accommodate the child in that classroom and set them up for success."

With the number of professionals/experts involved, and with the FASD Centre serving all of Manitoba, it can take 18-24 months for an FASD diagnosis.

FASD programs

In the mid-90s, the Point Douglas-Winnipeg Regional Health Authority collected data that indicated there would be a relatively high number of four year olds suspected with FASD or on the FASD Spectrum that were going to be attending David Livingstone Community School. Working with the Ann Ross Day Nursery and Mount Carmel Clinic, WSD created the Bridges program.

"This whole program began because we had the data that showed there was a need," said FASD Support Teacher Kirsten Varey.

Right from the start, students in the elementary Bridges program learn about FASD and how their brains function: from how they learn to how they feel.

"We learn about the zones of regulation and the feelings of each zone," said Lindsey, a student at David Livingstone. "If we're in the red zone, we're mad, if we're in the yellow zone we're feeling down, and if we're in the green zone, we're ready to go."

An area supporting students with an FASD diagnosis is typically clutter-free and distractions are kept to a minimum.

To help students focus, educators use low lighting and sometimes soft instrumental music. The rooms are painted a calming blue.

"These are tools that every classroom could use," said teacher Carla Mason. "Sometimes you have to think outside of the box in terms of what a traditional class is supposed to look like."

By the time FASD program students move from Grade 8 to high school, they will have already created a personal learning profile with Ms. Varey.

While the learning profile can take from six to eight months to complete, the result is a document that summarizes students' feelings about themselves, their strategies for learning success, scenarios that interfere with their learning and other important information that can be shared with other high school educators and support workers.

"The learning profile is a continuation of learning about themselves, but more importantly, it's a self-advocacy tool," Ms. Varey said. "The people who read these documents get a lot of valuable information about how to teach, support and encourage the students to be the best they can be."

The secondary FASD Passages teams at R.B. Russell—which includes educational assistants, teachers, administrators, guidance counselors, resource teachers, psychologists, social workers—meet monthly to discuss students' strengths and challenges.

Another important aspect of the Passages program is connecting students with supports that will continue once they leave high school.

"My hope is that the students are set up to be successful for after they leave here," said Andrea Johnson, a teacher at R.B. Russell's Passages program. "That means supported work experience and teaming up with agencies that will support them as adults."

Following high school, some students have moved on to university, Red River College and full time jobs, while others struggle after school is done.

There is little in the way of long-term data when it comes to adults with FASD in Manitoba; while such data collection can be difficult, WSD FASD program team members would like to see that change. They would also like to see more government-based resources for teens and adults with FASD.

"We don't always know that part of the story," Ms. Varey said.

"It's a lifelong thing. The students are coming to terms and understanding this is how their life is going to be."

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