Fetal Alcohol Spectrum Disorder (FASD) is a term currently used to refer to a variety of physical features and neurological and/or psychometric patterns of brain damage associated with fetal exposure to alcohol during pregnancy. Such damage to the brain can result in a range of structural, physiological, learning and behaviour disabilities in individuals. FASD is an umbrella term to indicate the spectrum of physical, cognitive and behavioural characteristics that can be seen in such individuals.
Fetal Alcohol Syndrome (FAS) is the medical term used to describe a specific identifiable group of people who all share certain characteristics: a specific set of possible facial features, central nervous system (CNS) dysfunction, and often growth deficiency and possibly other birth defects. In addition to FAS there are three other medical diagnostic terms; Partial FAS, Alcohol Related Birth Defects (ARBD) and Alcohol Related Neurodevelopment Defects (ARND).
Working with children diagnosed on the spectrum presents with many challenges as each one is so uniquely different. They can present with a variety of characteristics including some of the following:
some of the children are very verbal, but lack
understanding as to what is being said to them
they have difficulty with abstract reasoning, concepts of time, and/or understanding figures of speech as they tend to live in the literal world
while they seem to grasp a concept one day, the next day it is as if they never heard of it, but a few days later they might remember it again
difficulty listening, staying focused and engaging with others
they tend to be about half their chronological age with respect to emotional maturity
as they move into their teenage years, this maturity factor causes many children to be ostracized by their peer group, or they will tend to isolate themselves
The reality in Canada today is that many children, while presenting with some of these characteristics, may never receive any type of diagnosis. According to a report in the Canadian Medical Association Journal authored by Christine Lock, Julianne Conry, Jocelyn L. Cook, Albert E. Chudley and Ted Rosales:
The diagnosis of FAS has not been monitored consistently on a provincial or national basis, which has resulted in significant under-reporting and, therefore, an inadequate allocation of resources. A standardized interdisciplinary approach to early diagnosis is essential for more accurate surveillance of FASD. (CMAJ “March 1, 2005; 172 (5). doi:10.1503/cmaj.050135).
Despite this assertion Environics Research group in May 2006 reported
Fetal Alcohol Syndrome (FAS) is the leading cause of developmental disability among Canadian children. (Public Health Agency of Canada Prepared by: Environics Research Group May 2006pn5877).
In 2004, the Saskatchewan Institute on Prevention of Handicaps stated: “There may be students in your classroom affected by prenatal exposure to alcohol who may never be diagnosed. It is extremely important that educators are aware of this fact and develop an understanding of this often unrecognized disability.”
This article will highlight the strategies and interventions which were found to be helpful for this particular young person, but can also be applied to other children regardless of whether they have a diagnosis or not. In order to illustrate the practical reality of working with a child who has been diagnosed on the spectrum, a case study is presented. The child has a diagnosis of FAS.
Case study: Andrew
Andrew was an 8 year old boy living in a small rural community. The community has access to a major highway which results in many strangers travelling through the community on a regular basis. The parents are very engaged and active in the life of their child.
Andrew is very small for his age. As with many children presenting on the spectrum, Andrew is developmentally about half his chronological age. Academically, he is behind in many aspects compared to his peers. He has difficulty following directions, staying focused and completing assigned tasks.
He is a very likeable, engaging young boy. He has no fear of strangers and will engage in conversation with anyone at any time. In school he will stop to talk to everyone in the hallway between classes, before and after school. This causes him to be late for class on most occasions.In the community everyone knows Andrew. He presents with the same behaviours. He will stop to talk with anyone, and will even enter a persons” home uninvited to engage in conversation.
In a discussion with the family, school officials and other support agencies the question of what area of intervention should be the priority for Andrew was raised. There were two specific areas given consideration:
Given the number of strangers travelling through the community on any given day, and Andrews” lack of ability to discriminate between stranger and friend, teaching him to recognize the difference was one priority.
In school, the time spent in his classroom was being severely impacted by his constant stopping to talk with anyone who happened to be near him as he travelled the hallways. Teaching him to reduce this would enable him to spend more time accessing his special education support. Success with this would translate into more time accessing the curriculum.
One of the challenges of working with children who present with multiple issues is trying to determine which to focus on first. The biggest mistake that is often made is trying to attempt to deal with all the issues at the same time. One of the goals of any intervention would be to have that intervention, when successfully implemented, transfer to other situations. It becomes a building block in the foundation of the child's future experiences.
Since it was taking upwards of 13 minutes to have Andrew proceed from one classroom to another, it was agreed to try and reduce this time. As the school was a controlled environment versus the open community, it was felt if he was successful here, there was a better possibility of having success when it came to addressing the issue of talking to strangers.
It was decided by staff at the school, and supported by the parents, to use two strategies to assist him in managing his behaviour. The staff began by teaching Andrew self-talk. Self-talk introduces a statement which when repeated enough times, will be internalized in the child's thinking.
As a first strategy the staff first introduced this
–Andrew, when you leave your classroom to go to the music class (they would change the destination, i.e. art class, or phys. ed. class) what will you try to do as you walk down the hallway?”
Then the staff, with Andrew’s participation,
developed the following statement for him:
“When I leave my classroom to go to my next class, I will try to walk down the hallway without talking to anyone along the way.”
It is critical with this approach that the word “try” is in the question and in his answer. Andrew’s talking to people is a predictable behaviour. We know he will not automatically stop talking to people just because we have introduced the statement. When he talks to people we have to encourage him to try again. If we were to create the phrase using the word “will” instead of “try”, knowing he is not going to be successful in mastering this approach the first number of times, then we have set him up for failure. “Will” means he must. Using that phrase teaches him he “can’t”. The “try” gives him multiple opportunities to keep trying his best until he starts to make progress.
The time frame for teaching Andrew to answer the question with his response was estimated to be 2-3 weeks. His parents practiced at home. It was discussed with the parents that the practices take place in a relaxed atmosphere. The question could be asked at supper, or a quiet time in the evening. It should not take the form of a lecture or a demand. At school, the practice took place as part of regular conversation. It was also included with his social story, the second strategy.
The social story is a written version of the self talk. It has only one topic: in this case the social story was about what to do when walking down the corridor, on the way to class. It included the “try” statement. For more detailed information about Social Stories go to http://www.thegraycenter.org/social-stories.
The social story was then written with Andrew’s participation. Once written it could be placed where Andrew could refer to it from time to time. Here is an example of his social story:
In school, I walk the hallway with my classmates on
the way to our next class
When I see someone in the hallway, I get excited and I stop to talk with them
Before I know it my classmates are gone, and I am late for class
I will try not to talk to people as I walk along the hallway
This will help me be on time for class with my classmates
To further encourage a positive result, the staff would practice walking Andrew through the hallway. To further enhance the likelihood of success, he was provided with a pictorial representation of when to engage or not to engage with people between classes. It is important to note, all these interventions were presented from a positive perspective. Andrew is eight and he would not always want to participate in the activities. There were no repercussions for Andrew if he did not want to participate or if he did not “succeed”. Staff would engage him when they felt he was most receptive.
Finally, the day for Andrew to have his first real attempt at walking the corridor had arrived. That morning before he left for school his parents, having his class schedule at home, asked him to repeat what he was going to try and do when he had to leave his class second period and go down the hallway to his music class. It probably required a little prompting and help, but they were careful not to make it into a demand which might create a heightened level of anxiety. At school during first period, he was asked to use his self talk to voice what he was going to try and do. Also, his social story was reviewed with him.
At the end of the first period he left the class with his mates and headed out into the hallway. He walked down the hallway and never spoke to anyone “not so! The first person he saw, he excitedly stopped to chat.
At this point, it is critical to understand the amount of preparations carried out by other staff members in anticipation of this day. All staff was given a protocol to use when they encountered Andrew in the hallway between classes:
They allowed Andrew to calm down, as his excitement level increased when he stopped to speak with people.
They would then calmly ask him what he was supposed to do when in the hallway between classes. (This probably meant some prompting until he could reasonably use his self talk).They would then encourage him to speak his statement out loud.
They would not send him back to his class as some form of punishment, but rather tell him it was a good try and then ask him to continue down the hallway to his next class.
In the early days of this intervention, Andrew stopped to talk with any number of people along the way. However, all staff used the 3 steps above as best they could. At about the six month period, Andrew had improved from taking 13 minutes to move along the hallway to less than 2 minutes. All during this time, the family and staff continued to work with him on his self-talk and social story.
Whenever, and wherever possible, connecting the behaviour to the planned response (consequence) is very important. The more immediate the response is to the behaviour the more likely it is that he will be able make the connection. By stopping Andrew at the time he began to speak with others in the hallway, referring to his self talk and then allowing him time to process, he was starting to make the connection. If staff chose to send him along and speak to him later in the day, it is likely the intended connection to his behaviour would not be made.
While the immediate goal was to get down the hallway in a reasonable amount of time which we would consider a functional goal, the long term goal was teaching him self-regulation. Andrew was learning to manage his environment, draw less attention to himself, and interact with adults and peers in a more appropriate manner. As part of this intervention, Andrew was encouraged to speak with people at more appropriate times, such as before class, during recess and at lunch time.
His success gave Andrew a strong foundation to build upon his next challenge which was dealing with strangers. That is another story.