A Change of Perspective

Heather Paul

A Change of Perspective ​

My name is Heather Paul, and I am a Registered Psychologist. I have been involved in advocating for individuals with FASD since early in my career. I have worked in the areas of education, health and justice and have seen first-hand how a diagnosis and appropriate interventions have improved the quality of life for individuals and families affected by FASD. I have also witnessed how the lack of a diagnosis can impact the quality of life for individuals and families affected by FASD.
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Once a child or youth receives a diagnosis of FASD, support and interventions can be implemented. 
Those individuals and families that avail of the various supports offered have an opportunity to manage any presenting challenges and to set life goals.
In Newfoundland and Labrador, diagnosis of children with FASD has been available for approximately forty years. In the early days, diagnosis was made by well-informed pediatricians for those children who were fortunate enough to access these specialists. 
However, there were also problems – there were few medical professionals trained in the diagnosis of FASD; there was a lack of easy access to those professionals and a lack of comprehensive public education regarding FASD. Dr. Ted Rosales has been a driving force for the diagnosis of FASD within Newfoundland and Labrador for many years, and he proposed a model for multi-disciplinary teams. Dr. Rosales was recently presented with the Order of Newfoundland for his contribution as a Geneticist as well as his advocacy work for FASD.
The concept of a multi-disciplinary team for diagnosis was introduced to Central Newfoundland by Dr. Ted Rosales in October 2000 during a three-day workshop for professionals working with children. It was at this meeting my professional journey with FASD diagnostic teams began. 
Following the workshop, myself and another psychologist met regularly with the local pediatricians to develop a network for diagnosis. At the time, myself and the other psychologist did not practice within the hospital setting, so the “team” was actually a path of a liaison between ourselves and the pediatricians. If needed, Dr. Rosales offered consultation to the pediatricians. Unfortunately, about five years later, due to a re-location of myself and one of the pediatricians and changes in professional responsibilities of the others, this format has not continued.
From those early days to now, the FASD assessments in Newfoundland and Labrador are made by medical professionals who take it upon themselves to gather additional information needed for the diagnosis. The search for the information is fragmented as each discipline ( Speech Language Therapy, Occupational Therapy, Psychologist) is sought out rather than within the context of a sole purpose team. This can be time-consuming for the single medical professional and can delay intervention. 


There does exist one formalized multi-disciplinary team who meet regularly to conduct a clinic for the sole purpose of FASD assessment for children. This team was formed in 2014 and operates within Labrador Regional Health Authority. The team consists of an FASD Clinic Co-Ordinator , a Psychologist, a Speech Language Pathologist, an Occupational Therapist, and a Pediatrician. The clinic is based in Happy Valley-Goose Bay with a satellite clinic in St. Anthony. The members of this team are employees of Labrador Regional Health Authority. With the exception of the FASD Clinic Coordinator, whose full-time position is dedicated to FASD services, the remaining team members’ services are in addition to the full-time responsibilities of their respective positions with Labrador Regional Health Authority.   
There is another segment of the population that is not as readily served with assessment opportunities. 
Despite the best efforts by individuals such as Dr. Rosales, many children in Newfoundland and Labrador have not had an opportunity for an assessment. 
These children are now adults. FASD is a life-long disability. Because it is lifelong, adulthood presents different challenges than those seen in childhood.  
Adults with undiagnosed FASD are at risk for mental health and psychosocial issues. Trying to navigate the world as a child with FASD has its challenges – these are exacerbated as the individual enters adulthood. 
The adult with undiagnosed FASD is at risk for significant mental health issues, poor financial stability, legal issues, and difficulties with interpersonal relationships.
Adults who have a diagnosis of FASD and receive appropriate supports lead fulfilling lives. Navigating the challenges with interventions increases the likelihood of a life filled with great successes.
Adults who are not aware they would meet the criteria for a diagnosis of FASD often live a revolving lifestyle of psychiatric misdiagnosis, misunderstood social interactions, and engaging in risk-taking and impulsive behaviours. Legal issues are not uncommon. Memory can be affected, so adults often miss important appointments and obligations. They have poor employment histories. 
When an adult with undiagnosed FASD is faced with any challenge, there are assumptions made by others. As FASD cannot be identified without an assessment process, those interacting with an individual with undiagnosed FASD are at risk of applying traditional responses to inappropriate behaviours. Employers become tired of the employee always being late for the shift or not following what appears to be simple directions. Spouses and partners become frustrated at poor communication styles or impulsive behaviours. Friends tend to reduce social interactions due to inappropriate comments or behaviours. 
Landlords become irritated when rent is not paid on time. Law enforcement officials shake their head in wonder why a behaviour is repeated despite the use of consequences. 
Services for children and adults with FASD require a mindset change from all levels of government as well as the decision-makers in public health, justice, and social services systems. 
The financial impact of undiagnosed FASD on these systems is easily identified. And the solution often offered is also in the context of dollars and cents. 
The error in this thinking is that in order to provide solutions, one needs the financial means to do so. Thus, no money – no change. Great idea but…..no resources (money).
The reality is that the most important impact of undiagnosed FASD - the quality of life of the individual – cannot be reduced to a numerical or financial value. Quality of life does not appear to be considered when number-crunching is applied. Rather, it is the quality of life that should be the stimulus, motivator, and foundation for a solution.  
It is time for a change of perspective.



A personal story called Choosing Hope, a family story, highlights the importance of correct diagnosis, support and acknowledging the perspective of the individual. The video is available at the link below. 
https://www.vitalitenb.ca/en/points-service/health-centres-and-clinics/new-brunswick-fetal-alcohol-spectrum-disorder-fasd-centre-excellence/videos-and-testimonies