Glossary

Abstract Concepts - difficulty with abstract concepts such as time, math or money. Language problems; difficulty comprehending the meaning of language and accurately answering questions. May agree or confabulate - comply or fill in the blanks. Many talk excessively, yet are unable to engage in a meaningful exchange. The sheer volume of words creates the impression of competence. *SFSP

Academic/Intellectual Functioning: Academic Achievement -

Math - the ability to compute and to reason.

Reading: comprehension - the level of understanding of written material.

Reading: decoding - the ability to change written words into spoken words.

Written Expression - the ability to communicate in writing, independent of spelling skill; may include physical reproduction of letters and words and the organization of thoughts and ideas in written compositions.

Academic/Intellectual Functioning: Thinking and Reasoning -

Perceptual Reasoning - the ability to solve problems requiring visual perception, organization and reasoning with visually presented, nonverbal material.

Verbal Comprehension - the ability to reason with words and express acquired knowledge.

Adaptive Functioning - means the relative ability of someone to communicate, employ daily living skills, socialize and use motor skills, and it is generally correlated with the expected skills at a given age (Flanagan and Kaufmann, 2004)

Alcohol - a colorless liquid, produced by the fermentation of sugar or starch, that is the intoxicating agent in fermented drinks

Alcohol-Related Birth Defects (ARBD) - specific organ damage resulting from confirmed prenatal alcohol exposure.

Alcohol-Related Neurodevelopmental Disorder (ARND) - children with this diagnosis do not have growth impairment or the characteristic facial features of prenatal alcohol exposure but do have severe learning and behaviour problems, as well as a confirmed history of alcohol exposure. Children with this diagnosis may be just as disabled as children with pFAS or FAS. In fact, some evidence suggests that they have worse outcomes, probably because it is more difficult to get people to believe that their problems are real. *CL

Attention - the ability to focus selectively on a selected stimulus, sustaining that focus and shifting it at will; the ability to concentrate and resist distraction.

Binge Drinking - consumption of five or more drinks per occasion, or sitting. for a male, and three or four drinks per occasion for a female (NIAAA); a standard drink is equal to 13.7 grams (0.6ounces) of pure alcohol. Generally, this amount of pure alcohol is found in: 1.5 oz of 80 proof liquor, 12 oz of beer, 8 oz of malt liquor or 5 oz table wine (Center for Disease Control and Prevention)

Biomarker - a specific physical trait or a measurable biologically produced change in the body connected with a disease or health condition. For example, body temperature is a well-known biomarker for fever.

Changing Modalities - this requires transferring information from one area of the brain to another area of the brain. It involves acting after listening. Generally you can help a person change modalities by demonstrating specific steps. Before working with parents practise writing out each step and illustrating each step with a pictogram. The degree of agreement between modalities will indicate the degree of understanding held by the parent. *SFSP

Chronological Age - the number of years and days elapsed since birth. See also Developmental Age

Clinical Consultation - relevant professional consultation and guidance on issues relating to the effective and appropriate provision of services, such as: maintaining confidentiality; setting boundaries, and working with families with complex issues. In some cases, clinical consultation and job supervision may be provided by the same person, but this is not a requirement. (MCFD, 2009)

Communication: Expressive Language - the ability to communicate by expressing thoughts using spoken language.

Communication: Receptive language - the ability to understand spoken language.

Communication Challenges - appear to understand instructions, nod and agree, but are not able to comprehend. Often repeat rules verbatim then fail to apply the rules - "talk the talk" but don't "walk the walk". *SFSP

Complex Developmental Behavioural Conditions (CDBC) - a term used in British Columbia to describe children seen by the Ministry of Health's CDBC network of developmental clinics. This term is intended to describe children who have difficulty in multiple areas of functioning, whether or not they have prenatal alcohol exposure. *CL

Complex Developmental Behavioural Conditions (CDBC) Network - the network of Regional and Provincial Health Authority teams which provide multidisciplinary assessments for children and youth with significant difficulties in multiple areas of function including: development and learning, mental health and adaptive and social skills. (MCFD, 2009)

Conceptualizing - this requires developing a picture in your mind when the item or concept is not actually in sight. Help find the concept by using the person's preferred learning style; e.g. Use kinesthetic visual, auditory. If they are visual learners use pictures. A necessary requirement of conceptualizing is to link the concept to a meaningful time and place. For example, what does it look like for this family to stay together? Making a family album that dates back to the grandparent's time may create a visual concept of what "families together" represent. *SFSP

Cultural Safety Framework - this approach involves examining and understanding the historical power inequities, individual and institutional discrimination and the dynamics between professionals and members of an ethnoculteral group. (MCFD, 2009)

Developmental Age - an amalgam of a child or adolescent's physical development (assessed by skeletal maturity or bone age), together with the incorporation of mental, cognitive and emotional maturity. Developmental age is highly individualistic. See also Chronological Age

Diffusion Tensor Imaging (DTI) - is a powerful technique (Basser et al, 1994) that is excellent for studying white matter microstructure. DTI has been used to study brain abnormalities in children with FASD. (Lebel et al, 2010)

Disorder - a medical condition involving a disturbance to the usual functioning of the mind or body; a morbid physical or mental state

Dysmaturity - refers to the gap between the chronological and developmental ages in different domains (eg expressive language, social maturity etc.) due to the effects of prenatal alcohol exposure (Malbin); the term “uneven maturation” is also sometimes used to describe this condition. See also Immaturity.

Epigenetic - affecting a cell, organ or individual without directly affecting its DNA; may indirectly influence the expression of the genome. (medterms.com)

Epigenetics -
1. The study of heritable changes in gene function that occur without a change in the sequence of the DNA. For example: the process of DNA methylation and the process of chromatin remodeling
2. A conceptual solution to a conundrum, a puzzle that arises as a fundamental consideration in developmental biology (Waddington); refers to the regulation of gene expression without altering the actual DNA of an organism.
3. The way the environment - everything from stress to smoking - can affect the activity of genes

Executive Function - a set of complex cognitive abilities that control and regulate other abilities and behaviour. Executive functions are necessary for goal-directed behaviour. They include the ability to initiate and stop reflexive actions and responses, to monitor and change behaviour as needed, and to plan future behaviour when faced with novel tasks and situations. Executive functioning enables us to anticipate outcomes and adapt to changing situations. The ability to form concepts and think abstractly are often considered components of executive function; a set of abilities required to attain goals efficiently in nonroutine situations. (Kodituwakku)

Family - persons who play a significant role in an individual's life and act as his/her support network. Due to the diversity of family structures, it may include people who are not legally related to the individual.

Fatty Acid Ethyl Esters (FAEE) - byproducts of alcohol; when the fetus is exposed to large amounts of maternal alcohol, he/she accumulates the byproducts.

Fetal - relating to or characteristic of a fetus

Fetal Alcohol Spectrum Disorder (FASD) - a term for all three of the diagnoses related to prenatal alcohol exposure: Fetal Alcohol Syndrome, Partial Fetal Alcohol Syndrome, and Alcohol Related Neurodevelopmental Disorder. *CL
See separately Fetal Alcohol Spectrum Disorder

Fetal Alcohol Syndrome (FAS) - children with this diagnosis have all three of the features associated with prenatal alcohol exposure - (1) growth impairment, (2) characteristic facial features, and (3) severe learning and behaviour problems. This is the only fetal alcohol spectrum diagnosis that can be made without a confirmed history of alcohol exposure, because it is unlikely that all three would occur together for any other reason. *CL
See separately Fetal Alcohol Syndrome

Fetus - unborn offspring; an unborn vertebrate at a stage when all the structural features of the adult are recognizable, especially an unborn human offspring after eight weeks of development

Functional Assessment - the measurement of purposeful behaviour in interaction with the environment which is interpreted according to the assessment's intended use. It is the process of appraisal which can be used to measure ability, competence, or performance.

Generalizing Information - inability to generalize information; difficulty forming links and associations, unable to apply a learned rule in a new setting; learns to not take Johnny's bike, but then takes Mary's bike: It's not Johnny's. The lesson hasn't been generalized and applied to Mary's bike. *SFSP

Incidence - the rate of occurrence of new cases of a disease or condition. Incidence is calculated as the number of new cases of a disease or condition in a specified time period (usually a year) divided by the size of the population under consideration who are initially disease free. See also Prevalence.

Immaturity -
1. not fully grown or developed
2. a person does not respond to the circumstances or environment in an appropriate manner
See also Dysmaturity

Impulsivity - impaired judgment, often unable to make decisions. Difficulty understanding safety and danger, friend and stranger or differentiating fantasy from reality. Impulsivity coupled with inability to abstract and predict outcomes; acts first and then is able to see the problem after the fact. *SFSP

Jordan's Principle - is a child first principle to resolving jurisdictional disputes within and between federal and provincial/territorial governments. It applies to all government services available to children, youth and their families. (2008/09 Annual Service Plan Report, MCFD, 2009)

Learning Style - the preferred way by which people learn. Common learning styles include: visual (learn by seeing), auditory (learn by hearing) and kinesthetic (learn by doing). *SFSP

Learning Theory - a theory based on the belief that most brains function in a similar way.

Level of Stamina - how does fatigue affect this person? *SFSP

Memory - the ability to compute and to reason (working memory - the system used for holding and manipulating information while various mental tasks are carried out).

Memory (difficulties) - can include difficulties with information input, integration, forming associations, retrieval and output. Difficulty learning from past experiences. Often repeat the same mistake over and over again in spite of increasingly severe punishment. This is being able to find information when the information is needed. Explore what does work for the person. Fridge magnets, talking clocks, talking with friends are some options. Give lots of time without interrupting their thought process. Encourage others to provide information that can fill in the blanks. Accept that memory may not be available at times. If this happens, go on to a new activity or topic. For example, when doing long division 2 into 444; each time 4 is divided by 2 will have to be refigured. *SFSP

Metacognition -
1. awareness or analysis of one's own learning or thinking processes
2. a person's "ability to initiate activities, as well as to monitor behaviour and to remember important tasks related to social interactions" (Schonfeld et al, 2009)

Morbid - In Medicine: relating to disease; relating to or resulting in illness.

Neurobehavioural - linking behaviours to the brain dysfunction.

Neurobehavioural Assessment - one component of the assessment process for FASD implemented by a multidisciplinary assessment team. A diagnosis of FASD requires a comprehensive history and physical and neurobehavioural assessment. The neurobehavioural assessment includes the following domains: Hard and soft neurological signs (including sensory-motor signs), Brain structure (occipitofrontal circumference, magnetic resonance imaging, etc), Cognition (IQ), Communication: expressive and receptive, Academic achievement, Memory, Executive functioning and abstract reasoning, Attention deficit / hyperactivity, Adaptive behaviour and social skills and social communication. (CMAJ;Mar1,2005;172)

Neurobehavioural Disorder - this is a descriptive diagnosis and not an etiological (causal) diagnosis. It is used to describe individuals who have learning and behaviour problems that are less severe and/or less varied than those described as having Static Encephalopathy. In this case the experts would say that these problems are possibly related to a problem in how the brain works. Keep in mind that many children will get this description just because they are too young for formal testing of all aspects of learning and behaviour (we can do this testing with more confidence when they reach the age of 8 to 12). Young children with this description should still be considered at high risk for a diagnosis of fetal alcohol spectrum disorder when they are older. *CL

NeuroDevNet - The network, led by Dr. Daniel Goldowitz, Senior Scientist at the Centre for Molecular Medicine and Therapeutics (CMMT) and the Child & Family Research Institute (CFRI), will be hosted by the University of British Columbia (UBC). It will receive $19,572,000 in funding over five years (2010 – 2015) from the Networks of Centres of Excellence of Canada (NCE). The vision of NeuroDevNet researchers – whose expertise ranges from child development to brain imaging, genetics and developmental biology – is to accelerate the pace of understanding the causes of neurological deficits, with an initial focus on autism spectrum disorder,fetal alcohol spectrum disorder (FASD) and cerebral palsy.

Neurogenesis - the process whereby precursor cells, or stem cells reproduce, migrate to other brain areas and mature into neurons (Society for Neuroscience)

Neuroplasticity -
1. The brain's ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment. (medterms.com)
2. the responsiveness of the human brain to changing conditions (Mate)

Optogenetics -
1. using a combination of genetics and optics to control cells; gives nueroscientists the ability to control brain circuits in laboratory animals with lasers, to turn cells on or off with a flash of lights; offers a new way to probe what different parts of the brain do and could lead to new treatments for a variety of neurological conditions (Anne McIlroy, Globe and Mail, April 2, 2011)
2. the combination of genetic and optical methods to control specific events in targeted cells of living tissue, even within freely moving mammals and other animals, with the temporal precision needed to keep pace with functioning intact biological systems (Wikipedia, 2011)

Organizing - compromised executive functioning; may have difficulty planning, predicting, organizing, prioritizing, sequencing, initiating and following through. Difficulty setting goals, complying with contractual expectations, being on time or adhering to a schedule. This involves knowing what steps to take, what categories things in the person's world fit into. If a person has a "pasta pot" and another pot appears to be interchangeable, explore what makes the "pasta pot" work for the pasta and nothing else. Explore your values. For example, if you believe that clean clothes need to be in drawers, check to see what is useful to the person. It may be to keep clean clothes in a laundry basket until worn. *SFSP

Partial Fetal Alcohol Syndrome (pFAS) - children with this diagnosis have characteristic facial features AND severe learning and behaviour problems as well as a confirmed history of alcohol exposure. *CL

Perseveration - may be rigid, get stuck, have difficulty switching gears, stopping an activity, or transitioning to a new activity. Often react strongly to changes in setting, program or personnel. *SFSP

Physical Functioning -

Fine Motor Skills - coordination of small muscle movements which occur (e.g. in the fingers) usually in coordination with the eyes.

Gross Motor Skills - large muscle and body control and coordination; movements which primarily require the larger muscle groups.

Predicting Outcomes - impulsivity coupled with inability to abstract and predict outcomes; acts first and then is able to see the problem after the fact. This is to experience what "it" means before "it" has happened. A person affected with FASD may not recognize that they didn't know what the outcome would be after "it" has happened. They may feel very guilty as if they did "it" on purpose. Again, using the person's strengths and preferred learning style, work through possible outcomes. For example, if I stop at the (friends, bingo, bar etc.) when I get paid, the kids will be hungry. If I go straight (home, bank, support person etc.) we will have money for food. *SFSP

Prevalence - how commonly a disease or condition occurs in a population. Prevalence measures how much of some disease or condition there is in a population at a particular point in time. The prevalence is calculated by dividing the number of persons with the disease or condition at a particular time point by the number of individuals examined. See also Incidence.

Primary Disability - a behaviour that most clearly reflects differences in brain structure and function.

Probable FASD - children and youth whose challenges are likely related to prenatal alcohol exposure, including children who are too young for diagnosis, and children who do not meet the criteria for referral to the CDBC Network. (MCFD, 2009)

Processing Speed - speed or fluency in accurately performing tasks or solving problems; examples: visual scanning, grapho-motor output, thinking through a new situation, problem-solving

Secondary Disabilities -
1. “begin with discrepancies between expectations and a person’s ability to perform” (S. Clarren, 2004) (see Resources for complete reference)
2. “develop over time when there is a chronic ‘poor fit’ between the person and his or her environment” (D. Malbin, 2002) (see Resources for complete reference)
3. “those that arise after birth and presumably could be ameliorated through better understanding and appropriate interventions” (The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities)
4. “emotional and societal problems related to their difficulty managing typical expetations” (Streissguth and Kanter, 1997) (see Resources for complete reference)
5. may include:
fatigue, frustration, anxiety, anger, non-compliance, shut down, avoidant, blaming, poor self-esteem, isolation, depression, disruption, tantrums, annoying behaviours, irritability
extreme school problems, trouble with the law, employment problems, drug and alcohol issues, mental health issues, victimization, difficulties with parenting, difficulties with independent living, exploitation, and inappropriate sexual behaviours
6. vulnerability to certain mental health conditions and addictions may be increased due to conditions such as prenatal stress and trauma and early attachment issues; these conditions may alter the developing brain

Self Determination/Independence -

Adaptive Behaviour - the ability to meet the age-appropriate standards of personal independence and social responsibility expected of individuals in his/her age and culture.

Sensory Differences - sensory systems dysfunctions; may be over-reactive to stimuli; e.g. tactile defensiveness, may be easily overwhelmed by sensory input, may be unable to filter out extraneous stimuli, symptoms of which appear as increased agitation, irritability, aggression or others. May be under-reactive to pain, may not complain of earaches, broken bones and be unable to experience painful stimuli. *SFSP

Sensory Integrative Therapy - is based on the proposition that functional performance deficits in individuals result from a failure to appropriately process sensory information. Therapy is directed at altering underlying neurological processing rather than developing skills. (Stephenson and Carter, 2008)

Sensory Processing - the ability to receive and interpret stimuli; sensory processing begins in specialized nerve cells found in the sense organs such as the eyes, ears, tongue, and nose and the rest of the body (ie in the skin, muscles and joints).

Sequencing - this is to experience the beginning, middle and end of an event in the correct order. For example, help the person "walk through" an event they are trying to explain or recall. *SFSP

Similar Neurodevelopmental Conditions - children assessed by the CDBC Network as having a neurodevelopmental profile similar to those found among children with FASD, but for whom there is no clear documentation of prenatal alcohol exposure. Neurodevelopmental conditions are most similar to FASD when they are diffuse (affecting multiple areas of brain function) and when problems with self-control, and executive functioning (decision-making and planning) are prominent. (MCFD, 2009)

Slow Auditory Pace - central auditory delays means language is processed more slowly, requiring more time to comprehend. May only grasp every third word of normally paced speech. *SFSP

Slow Cognitive Pace - may think more slowly, say "I don't know", shut down or require minutes to generate and answer rather than seconds. Those with FASD are "ten-second people in a one-second world". *SFSP

Social-Emotional Functioning -

Feeling Secure and Capable - usually the Internalizing Problems on the BASC 2 (e.g. self-esteem, emotions, symptoms of anxiety and depression, relationships with others).

Following Rules and Keeping Safe - usually the Externalizing Problems on the BASC 2 (e.g. hyperactivity, aggression, conduct problems).

Spectrum - a range of values or ideas

Static Encephalopathy - this is a descriptive diagnosis and not an etiological (causal) diagnosis. In plain English, it means a brain disorder that is not getting worse and not getting better. In this context, it is used to describe individuals who have a pattern of learning and behaviour problems that are severe enough and varied enough that experts agree they are probably related to a problem in how the brain works.
Children with all three of the FASD diagnoses are described as having Static Encephalopathy. However, the term is also used when a child or youth has the kind of learning and behaviour problems associated with FASD, but there is no confirmed prenatal alcohol exposure. In this case, they would be described as having Static Encephalopathy, Alcohol Exposure Unknown. *CL

Strengths-based Approach - an approach that promotes the child and family's strengths and resources in order to improve the functioning of the child, youth and family and minimize secondary risks associated with FASD. (MCFD, 2009)

Syndrome - a set of symptoms occurring together; the sum of signs of any morbid state.

Teratogen - any agent or factor which causes abnormalities of development in an embryo or fetus.

*CL
Christine Lilley, PHD
Registered Psychologist
Sunny Hill Health Centre for Children
May 2008

*SFSP
Structured for Success Project
South Fort George Family Resource Centre
Prince George, BC
May 2008