Each person with Fetal Alcohol Spectrum Disorder has a talent, says Judy Pakozdy.
And she would know.
Pakozdy has many years of experience in the field. As executive director of the Fetal Alcohol Syndrome Society Yukon, she’s made it her life’s work to support people with FASD.
“All people with FASD have at least one area of magnificent skills,” she said in a recent interview.
“And, if you can focus in on that one area and develop it then you’re really ahead of the game.”
Fostering that talent is the problem.
If a child with FASD has a particular knack for sinking hoops, but is failing a course in school, a common reaction is to cut back court time, said Pakozdy.
However, this kind of punishment doesn’t work for children with the disorder because they suffer from brain damage, not a behaviour problem.
Mistaking FASD for behavioural disorders is common and problematic, she said.
To fix this, the Education department and the Child Development Centre have teamed up to diagnose school-aged children and youth with FASD.
Why is a formal diagnosis important?
Children with FASD often struggle in the classroom from an early age and many undergo extensive assessments in the school system, Pakozdy said.
Without a specialized FASD assessment team, which includes an occupational therapist, a speech and language pathologist, a psychologist and a pediatrician, the disorder is often misdiagnosed.
“They’re often labelled with psychiatric illnesses,” Pakozdy explained.
“I know a two-year-old who was diagnosed with obsessive-compulsive disorder.”
Once a child is misdiagnosed, the problematic behaviour is also mismanaged.
For example, children with FASD often experience “sensory overload” in child-care centres.
Overwhelmed by the bright colours, loud chatter, music and activity, they react with rage.
“They scream or they or run or they will attack other kids. They often have a ‘fight or flight’ response,” said Pakozdy.
Their anger stems from brain damage, not a behavioural problem, she added.
Because of this, reasoning with a child with FASD will not change behaviour.
Children with FASD also have severe language delays and have trouble understanding and following rules, she said.
This combination of problems means children are often bounced from centre to centre.
A proper diagnosis is key to making a young person’s experience in child care meaningful, according to Rachelle Best, FASD diagnostic co-ordinator at the Child Development Centre.
“It’s really getting that understanding of that child, so that the behaviour isn’t what we’re trying to change,” she explained.
“It’s the environment that we’re trying to change so that the child is living in an environment that’s well-supervised, has good routines, provides them with this optimal learning and gives them a chance to be who they are.”
Understanding the root of behaviour, which, for FASD, is brain damage due to prenatal alcohol exposure, also helps the adults respond in a constructive way.
Knowing this, parents, educators, child-care workers and, down the road, employers can make changes in the environment to remove triggers for negative behaviour and build on a child’s skills.
This is another advantage of arming a child with a diagnosis before they enter primary school, said Pakozdy.
“These kids don’t necessarily succeed academically,” she said. “The biggest thing (a diagnosis) changes is your expectations.
“You know that you don’t have a rocket scientist here. But you might have a carpenter if you play your cards right.”
With access to an FASD diagnosis, schools are better equipped to respond to a student’s individual needs, according to Stacey Burard, an educational psychologist with the Education department.
This could mean providing the student and teacher with support and programs.
“A diagnosis would help by providing us with the knowledge to make better decisions,” she said.
Traditionally, however, it has been an uphill battle to get an FASD diagnosis in the territory, according to Pakozdy.
While physicians would occasionally make a FASD diagnosis, those people often had to travel to southern clinics.
There they could face monstrous wait lists.
Today, the situation is not much different. But it is changing by “little steps,” she said.
Just over two years ago, with a grant from Health and Social Services, the Child Development Centre developed a diagnostic program for preschool children suspected of having the disorder.
Anyone can refer a child to the assessment program, said Best.
However, to undergo a diagnosis the child’s parents or legal guardians must agree to the assessment; there must be suspected alcohol consumption during pregnancy; and the child must be five-years-old, or under.
Best stresses the diagnosis does not exist in a vacuum.
“It’s a much better, more inclusive approach so that the child’s not left with just a label,” she said.
“We’re actually providing intervention by doing the assessment and providing better programming after the assessment.”
This could include giving a child more time with a child-care worker, tweaking the existing programs at the centre or making referrals to other specialists.
What happens after a child walks through the doorway of a kindergarten class?
Right now it means a trip south.
That is about to change.
The Education department and Child Development Centre will launch the FASD assessment program before students put down their pencils for summer vacation.
The program has been in the works since September, and the first diagnosis could be made by March, said Burard.
Students between the ages of six and 18 will be eligible for a diagnosis.
The program will take the children with the highest needs first and will focus on integrating many different services.
“We are really interested in an interagency approach,” she said.
By involving family, social workers, health-care professionals and the school, Burard hopes the diagnosis will be tailored to each student.
“What manifests in one child may not manifest in another child,” she said.
“Each child presents with his or her own unique needs.”
Giving children and youth with FASD support is part of community building on a broad scale, according to Best.
“Children who receive assessment and diagnosis . . . have a better chance of not ending up with the secondary characteristics of FASD, such as homelessness, joblessness, school drop-out, addiction and mental health issues,” she said.
“If we can help this child reach their full potential then, eventually, we’re going to be having healthy families and healthy communities.”