Guide – FASD Learning
FASD Resource Learning Tool
This is Me is designed to increase understanding of and facilitate support for individuals with FASD and others who are part of their support system or environment. This is Me creates a visual context to assist individuals to learn, understand and explore some of the brain-based behaviours, strategies and strengths associated with FASD.
Scenarios in This is Me are designed to…
- Help others make a shift to understand an individual’s experience and that their challenges and learning difficulties are brain based.
- Encourage discussion about the value and effect of making accommodations (changes), modifying environments and belief systems— “Okay, so now, how do we change our environment and our expectations to help an individual with FASD (specifically my child, family member, student, employee, etc.) have a more positive life experience with a better chance for success?
- Develop empathy (understanding) for Me, as this empathy can help engage others in problem solving, identifying strategies and making modifications to the environment more suited to Me.
Brain Domains: The Structure of This is Me
This is Me is based on the concept of brain domains, which are used to describe brain function (purpose and job). This concept recognizes that alcohol can impact the developing brain at a structural (physical level), cellular, and neuro-chemical level (brain chemicals). This directly impacts brain functioning, which is often seen in an individual’s development and behaviour.
Fetal Alcohol Spectrum Disorder (FASD) is a medical diagnosis which describes the effects caused by alcohol use during pregnancy. Most often there are no obvious physical signs to show a person has FASD, but the brain can still be impacted. Prenatal alcohol exposure may impact multiple areas (“domains”) of brain functioning. The new Canadian Diagnostic guidelines require (need) major differences in at least 3 different areas, resulting from prenatal alcohol exposure. Individuals who meet these conditions may be diagnosed with:
FASD with facial features
short palpebral fissures (small eyes), smooth philtrum (smooth skin between nose and upper lip) and thin upper lip
FASD without facial features
There are Ten Brain Domains (Functions) that can be impacted by alcohol use during pregnancy, which may lead to a diagnosis of FASD, they are:
The Manitoba FASD Diagnostic team continues to measure and consider the Sensory Domain as an important factor in understanding an individual’s capacity.
The new Canadian Guidelines for FASD diagnosis (Cook et el “Fetal Alcohol Spectrum Disorder: A guideline for diagnosis across the lifespan,” CMAJ 2015. This illustration has been adapted from a diagram contained in the “Every Day is an Adventure: What Parents and Caregivers Need to Know About FASD”, Healthy Child Manitoba.
Description of the Ten Brain Domains (Functions) Impacted by FASD
Academic Achievement: A person may have difficulty in school, which translates to reading, math, spelling, and comprehension (understanding). The ability to do well in school depends on multiple areas of brain function working together and the opportunity to have a school setting that provides the necessary resources for learning. Unfortunately, individuals with FASD are often labelled as “not motivated” or “not trying”. Therefore, understanding these learning challenges as a reflection of brain differences and adapting (changing) the environment to provide a good fit for the person with FASD can result in a more positive learning experience and greater success.
Attention: Individuals with FASD can be easily distracted, have difficulty paying attention and sitting still. They may be overstimulated by both visual (what they see) and auditory (what they hear) information. Behavioural challenges may include being “off task”, inattentive, and appearing hyperactive.
Thinking and Reasoning (Cognition): This means challenges with processing speeds (take in and use information), reasoning, planning, solving problems and comprehending (understanding) complex ideas. Often individuals with FASD can show a wide range of IQ scores. Persons with extremely Low scores in IQ may qualify for life long disability services.
Language (Receptive: understanding what is said and Expressive: putting thoughts into words): Persons with FASD often show a delay in language development, difficulty understanding lengthy conversations and instructions, as a result can be incorrectly accused of “not listening”. With age, individuals may appear to speak well, but may be unable to fully grasp the meaning. For example, they may be able to repeat instructions or rules, but may not be able to follow through. It’s important to remember, although an individual with FASD may be talkative, their language may still be developmentally lower than their peers. Difficulties with communication especially affect social interactions and academic achievement.
Memory: This can mean difficulty with long-term, short-term and/or working memory. An individual may have trouble with memorizing, may seem forgetful, and experience difficulty with accessing, selecting and organizing information when needed (for example-remembering what they were just told to do). In other instances, an individual may seem as though they are lying, or storytelling, but in fact they are filling in the blanks when unable to remember.
Executive Functioning: Individuals with FASD often have trouble with planning, sequencing (placing items in order), problem solving and organizing. A person with challenges in executive functioning may also be impulsive and/or hyperactive with difficulty managing emotions. Sometimes they can become stuck on a specific thought or idea. A person may have difficulty understanding cause and effect and controlling behaviour, sometimes leading to repeated mistakes. Challenges with transitions and change are common, as well as difficulty with concepts, abstract ideas, consequences and managing time. Problems in this area impact most every aspect of day to day life.
Living and Social Skills (Adaptive Behaviour, Social Skills and Social Communication): In this area an individual with FASD may not understand personal boundaries and have difficulty reading social cues. They can be socially vulnerable and easily taken advantage of, in addition to having difficulty seeing things from another’s perspective. They can present as being socially and emotionally immature and may behave younger than their actual age, even into adulthood. Challenges with addressing hygiene (self-care) needs, understanding money, time and managing healthy coping skills are often impacted.
Brain structure and Function (Neuroanatomy/Neurophysiology): An individual with FASD, may have a smaller head, brain size, and/or a seizure disorder, and in some circumstances abnormal results on a scan (e.g. MRI or EEG) consistent with prenatal alcohol exposure.
Motor Skills: Individuals with FASD may have difficulty with gross motor skills, such as balance, strength, endurance, coordination, reflexes and muscles tone, as well as challenges with fine motor skills, such as using a pencil for writing, scissor use, doing up buttons and zippers and other fine motor manipulation. Another area of challenge may be visual-motor integration, which is the ability to use visual skills (e.g. correctly recognize a form/shape) together with motor skills (e.g. to replicate or copy shapes). This skill is important when individuals are learning how to copy shapes or print letters.
Affect Regulation (Ability to Control and Adjust Emotions): An individual with FASD may experience challenges in the areas of mental health, such as: anxiety, depression, and mood imbalance in the severe range. This means a mental health diagnosis in this area needs to be made before Affect Regulation can be counted as a brain domain impacted by FASD.
Sensory: Individuals with Sensory processing challenges may be over or under sensitive (or both) to different sensory events, for example: movement and body awareness, smell, touch, taste, visual (what is seen), and auditory (what is heard). This may present as:
- Easily overwhelmed by bright lights, people, and noisy, crowded, overstimulating environments.
- Easily startled by loud sudden noises or unexpected touch
- Avoids touching people of hugging others. Refuses to wear certain clothing or touch certain textures
- Plays roughly and takes physical risks
- Can Invade other people’s personal space
- High or low tolerance to pain and temperature
- Clumsy and uncoordinated
- Difficulty with self-regulation (just right level of energy needed to respond to sensory events)
- Overwhelming sensory experiences may trigger a fight, flight or fright response.
Important Key Concepts to Know About FASD:
FASD is caused by physical changes to the brain
Over 40 years of research has found FASD to be a physical brain-based disability that is usually invisible. Most often there are no observable facial differences to indicate (show) a person has FASD. Each individual is unique with differences in how they experience brain based challenges. The problem arises when others view behavioural difficulties through a lens that assigns intention—“he/she did it on purpose”, without recognizing the brain’s role in the outward behaviours.
Understanding Protective Coping Responses related to FASD
Without identification of FASD and meaningful accommodations (changes), self-protective or defensive characteristics (behaviors) can develop over time as a result of on-going frustration, trauma and repeated failure. These types of reactions are unintentional (not on purpose) and are the brain’s response to long term stress, and emotional pain, indicating a “poor fit” between the needs of the person and their environment and can present as the following:
- Easily frustrated (short fuse, anger)
- Easily fatigued/tired (may show as over-activity, irritability, and/or tantrums)
- Confusion, anxiousness
- Destructive behaviours (not due to curiosity or just taking things apart)
- Lonely, isolated
- Vulnerable, easily manipulated or set up by others
- Disruptive in class or at work
- Fearful, avoidant, withdrawn, sad
- Disengaged (distant, shut down)
Standard Learning Theories Do Not Apply
Most typical parenting or behavioral approaches used in supporting and working with individuals with FASD are based on standard learning theories, which do not make allowances for brain differences. Many widely used techniques (practices) use Cognitive-behavioural approaches which will not be appropriate without significant adaptations (changes). Standard (regular) methods such as lecturing, time out, star charts, consequences or punishment are all based on various learning theories that do not fit with FASD. In order for a person to change their behavior, the brain must process language quickly, form associations, store and retrieve information, generalize and predict. For many individuals with FASD this can be an impossible task. Effective techniques develop from understanding the individual, including appropriate accommodations (changes) and recognizing that patience, repetition, modelling and practice are more effective strategies that also serve to preserve an individual’s dignity.
The Powerful Role of Relationship
Relationship is the single most critical “strategy” when working with individuals with FASD. “We need to keep in mind the need for a secure, safe and significant relationship that fosters a sense of confidence, competence and well being”.
The ability to understand and value an individual for who they are, will also help to predict and prevent challenges and avoid crisis situations. It’s important to involve the individual in “plans” and strategies (as they are able); ask them what they think, what they need. This allows them to have a voice, serves to validate their thoughts and feelings and as a result “plans and goals” have a greater chance of being successful. Building a relationship can be accomplished in many ways:
- Try to understand the world through their eyes, place yourself in their shoes.
- Acknowledge their successes and how hard they try, ask others in their life to provide positive feedback to them.
- Give them lots of opportunities to “try again”.
- Always use a calm respectful tone of voice, esp. when situations have the potential to escalate.
- Stay in the present when dealing with issues, speak about what you “observed”, and wait until the situation has calmed (make sure you use “less words”).
- Remember not to take things personally.
- Set aside time to spend together, this conveys they are a priority (remember “being with”, does not mean you need to be talking).
- Ask them to teach you something that’s important to them, like a sport, cultural practice, language, or craft (let them be your teacher or the “expert” on a task).
- Demonstrate through action, that you can be counted on; you will follow through.
- Use humour; laughter can build a lot of bridges (when appropriate).
Acknowledgement: Adapted from Stephen de Groot, Myriad Consultation and Counselling
Enhancing Strengths and Understanding Challenges promotes positive outcomes
Individuals with FASD, just as everyone else, are good at many things. They may be loving, eager to help, curious, affectionate, friendly, artistic, musical, work well with animals and in the outdoors, be very loyal and show great determination to succeed in life. Strengths can be utilized and enhanced (improved) when looking at building self-esteem, promoting learning and creating successful experiences.
Some Common Learning Strengths:
- Visual learner: learns by being shown, rather than being told
- Learns best one to one
- Operates well with multimodal learning (hear, see, touch)
- Hands on, concrete, experiential, learns by doing
- Incorporate interests and strengths into learning
Changes to Environment is Central to Success
Persons with FASD have physical brain-based differences that impacts their day to day ability to adapt to the environment and meet some of the expectations placed on them by others. Therefore, it is necessary to provide accommodations/adaptations (changes) to the environment that fit for the person with FASD. This same approach is applied for individuals with physical disabilities; and commonly referred to as “Accessibility”.
To understand the role the environment plays, we need to appreciate that it is made up of many parts, each of which can have a specific impact on an individual with FASD. Understanding these various components (parts) can help in identifying which adaptations (changes) can be the most effective to support a person with FASD.
The most obvious component is the physical environment; which includes the shape and size of a physical space/room, colors, lights, sounds, odors, furniture and equipment. The organization of a physical space can have an impact on an individual. For example, if a space is busy, disorganized, cluttered, and undefined, this can lead to an individual feeling overwhelmed and distracted in addition to difficulty focusing and paying attention.
Less obvious, but more impactful pieces are the human environmental factors. These include our personal values, our way of thinking, schedules and routines, rules, expectations and our communication style. Fast paced, lengthy and unpredictable activities can create problems. In addition, unspoken social norms/rules, and behaviour expectations that do not consider an individual’s level of emotional, social and academic development are problematic. Language can be confusing and overwhelming, esp. when too many words are used, spoken to quickly, with different descriptions used to explain a similar situation.
- The ideal environment would include well defined areas, organized spaces, clear of clutter, reduced noise levels and scent free if possible.
- Organized and predictable routines combined with visual cues and planned transitions are often best. These types of strategies help to ease an individual from one activity to another.
- Using fewer words, slowing down when communicating and allowing for longer response time, for individual’s with FASD can be very effective.
- Adjusting expectations to take into account a person’s developmental age instead of chronological age will reduce frustration and increase success.
How to use This is Me as a Learning Tool
This is Me is an imaginative, powerful tool that can create empathy and build understanding for caregivers, service providers, professionals and individuals with FASD. It assists individuals to better understand challenges that result from brain differences related to FASD. The goal is to help people think in new ways about FASD, ask questions, and envision (see) new possibilities. This is Me is made up of animated scenarios grouped into three sections: My Strengths, My Challenges and Strategies for Me. These portray (show) situations and behaviour reactions that can be common to individuals with FASD, along with illustrations of ways to interact and respond, leading to more successful outcomes, relationships and supportive environments.
This is Me can be used:
- One to one with an individual with FASD
- With families or caregivers living with an individual with FASD
- As an educational resource for service providers, clinicians and small or large groups
Learning About Strengths
Begin by reviewing the animated scenarios in My Strengths, in addition to the “Other Strengths”. Looking for Strengths is a foundational skill when supporting an individual with FASD, as this is an area that can be encouraged, enhanced and included when developing strategies.
Explore this section; these are organized under eight of the 10 brain domains to help you review, reflect and analyze (study) each of the scenarios in My Challenges, several questions have been developed:
- What is happening in this scene?
- What is expected of Me?
- Using your knowledge of FASD, which brain domains/functions are experiencing challenge?
- What is a common interpretation (explanation) of Me’s behaviour?
- What are Me’s strengths that can be built on?
- What accommodations or strategies could create a better fit for Me, or What did Me need from others?
In this section, the Strategies for Me address more than one Challenge. When viewing a Strategy consider the following questions:
- What adaptations/accommodations (changes) have been made for Me?
- What benefits (rewards) are evident, or can be anticipated (expected) for Me?
- What are Me’s strengths?
- Can this strategy be applied in a different setting (home, school, community, or workplace)?