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Glossary of Terms
ABAB:
A type of single-subject research design in which observations are made during a period of usual care (baseline - A). An intervention is begun and continued for a period of time (B). If a desired change takes place, the subject is then returned to baseline (A) and again observed for a specified period of time to see if the improvement diminishes or is lost. The subject is again given the intervention (B). If the previous improvement returns, it is then confirmed that the treatment worked and can be continued.
Allele: one of two or more variations of a gene that can occupy the same position (locus) on a chromosome.
Aphasia: the complete or partial loss of ability to use or understand words.
Apraxia: a disorder of voluntary movement, consisting in partial or complete incapacity to carry out deliberate movements, without impairment of muscular power, ability to feel, or coordination. May be specific to speech.
Applied Behaviour Analysis (ABA): a style of teaching that uses a series of trials to shape a desired behaviour or response. Skills are broken down into their simplest components and then taught to the child using a system of reinforcement.
Asperger's Syndrome (AS): a developmental disorder on the autism spectrum defined by impairments in communication and social development, and by narrow interests and repetitive behaviours. Unlike typical autism, individuals with Asperger's Syndrome have no significant delay in language or cognitive development.
Attention deficit hyperactivity disorder (ADHD): a condition with specific core symptoms including developmentally inappropriate degrees of attention, disorganization of thinking, distractibility, problems with concentration, lack of impulse control, and hyperactivity, all of which vary in different situations and at different times. Common secondary symptoms include perceptual and emotional immaturity, poor social skills, disruptive behaviours and academic problems.
Atypical Antipsychotic Drugs: a class of drugs that are used to treat severe emotional or behavioural disorders. They differ from conventional antipsychotic drugs in their lack of side effects such as movement disorders.
Atypical autism: a general term for conditions that are close to but don't quite fit the set of conditions for autism or other specific conditions.
Auditory Integration Training (AIT): auditory integration training is a therapy based on a theory that the small internal organs of the ear can be exercised and that this can lead to modification of sound perception and behaviour. Musical sounds are washed through a filtering apparatus that alters them, emphasizing some tones and reducing the intensity of others. The treatment is modified to suit individual needs as determined by special auditory testing.
Augmentative communication: the use of aids to help the child with autism to communicate his/her wants and needs. For example, photographs, picture exchange communication.
Autism Behaviour Checklist (ABC): A checklist containing a list of behaviours and scores, which appear to be capable of measuring the level of autistic behaviours in individuals.
Autism Diagnostic Interview (ADI): a fairly technical diagnostic scale for autism developed by the Medical Research Council in London, England. It is a standardized parent interview that can be used to assess children and adults with a mental age of 18 months and up.
Autism Diagnostic Observation Scale (ADOS): a standardized play session that allows the examiner to observe communication and social behaviours that are associated with autism. It requires 20 to 30 minutes to administer.
Autistic savant: an autistic individual who displays incredible aptitude for one or two skills (e.g., amazing musical or art ability).
Autistic spectrum disorders: term that encompasses autism and similar disorders. More specifically, the following five disorders listed in the DSM-IV: Autistic Disorder, Asperger's Disorder, Pervasive Developmental Disorder - not otherwise specified, Childhood Disintegrative Disorder, and Retts Disorder.
Bayley:
a developmental assessment used for children age one month to 3-years old. It is composed of mental, motor, and behaviour scales.
Bias:
deviation of study results from the truth, or the processes that lead to deviation. Factors such as the way data are collected, analyzed, interpreted, or even published can bias the research results. (see also recall bias)
Blind or blinded study:
a study in which the researcher and/or the patients are unaware of whether they have been assigned to the group receiving the active treatment or to the control group.
British Picture Vocabulary Scale:
used as a initial screen of children’s language comprehension, especially for children who are entering preschool. This version is based on items commonly seen or used in the United Kingdom and the vocabularly reflects British words or concepts. The child being tested needs only to point to a picture and does not have to be able to read, write or speak.
Broader autism phenotype (BAP):
refers to the presence of autistic traits or characteristics like low eye contact or language problems in the relatives of people diagnosed with ASD.
Childhood Autism Rating Scale (CARS):
A short rating scale that helps measure and distinguish mild and moderate autism from severe autism in children
Case-control study:
a study in which two groups, one having the condition of interest and the other without it, are compared. The study looks backwards in time to see the rate at which the groups have been exposed to the factor believed to be associated with the condition in question.
Case-series:
a report on a number of cases of a condition or disease.
Celiac (or coeliac) Disease:
a disease in which the intestinal lining becomes inflamed after ingestion of foods containing gluten (a protein found in oats, wheat, rye, barley and triticale). The symptoms in infants in children include diarrhea, slow growth, bloody stools, weight loss, and vomiting.
Central coherence:
people with autistic disorders are said to have weak
central coherence, in that they focus on details without getting the
gist or whole picture.
Childhood Autism Rating Scale (CARS):
a test developed at TEACCH to diagnose autism. The child is rated in 15 areas on a scale up to 4 yielding a total up to 60, the ranges are "non-autistic," "autistic," and "severely autistic".
Childhood Disintegrative Disorder:
a condition occurring in 3- and 4-year-olds characterized by a deterioration of intellectual, social, and language functioning from previously normal functioning. Children with this condition, which is sometimes misdiagnosed as autism, develop normally for a prolonged period of time, but then experience loss of social skills, bowel and bladder control, play behaviours, receptive and expressive language, motor skills, and nonverbal communication skills.
Chromosome:
a structure (typically 46 in humans) in the cell nucleus that is
the bearer of genes.
Clomipramine:
a medication which treats both depressive and obsessive symptoms
Cognitive Behavioural Therapy (CBT):
a treatment used for depression, anxiety, and obsessive-compulsive disorder that involves identifying the thoughts or beliefs that precede symptoms, learning ways of countering them, and adopting behaviours that improve mood or overall functioning. It can be delivered to individuals, groups, or families.
Cohort study:
follow up of two groups, one exposed to a factor thought to
cause a condition or disease, and the other not exposed to that factor. The two groups are later compared to see if there is a difference in their rates of the condition or disease.
Co-interventions:
treatments other than that under study that are being used during a research project. They pose a serious problem because they make it difficult to determine if the treatment under study is actually responsible for a positive (or negative) effect on a patient.
Communication and Symbolic Behavior Scales Developmental Profile:
a simple screening and evaluation tool that helps determine how well infants and young children use eye gaze, gestures, sounds, words, understanding, and play.
Comparison group:
(also, control group) any group to which the group under treatment is compared.
Convenience sample:
a convenience sample is a group of people under study who have been assembled based on the ease of interviewing them or on accessibility to their records, etc. While this type of sampling can help produce good information about a topic, its major disadvantage is that there is no way of knowing if the group is representative of the population as a whole.
Cross-over design:
a way of comparing two or more treatments. After completing one treatment, participants are switched over to another. If two treatments are being compared, one half of the patients are randomly assigned to receive treatment A, then B, and the other group is then assigned to receive B, then A.
Cross-sectional study:
a study that looks at the relationship between diseases and other factors that exist in a given group at a given time. These factors are examined in each individual members of the group under study to determine how the co-existing factors influence the rate of disease.
Deoxyribonucleic acid (DNA):
the molecule that encodes genetic information in the nucleus of cells. It determines the structure, function, and behaviour of the cell.
Developmental regression:
a form of autism in which infants, after apparently normal development, start
to lose language and other skills. This condition is fairly rare and has not
been well described, nor does it have scientifically established standards
for diagnosis.
Discrete trials: refers to a behavioural training technique in which behavior is modeled, the child is prompted to perform it, and a reward given if the student’s behavior is what is desired. If the response is not corect, the sequence is repeated until the desired behavior is shown.
Diagnostic and Statistical Manual (DSM-III, DSM-III-R, DSM-IV):
the official system for classification of psychological and psychiatric disorders prepared by and published by the American Psychiatric Association.
Double-blind crossover study:
a research design in which patients are assigned to receive both active treatment and placebo in sequence, and neither the researcher nor the patient is aware of which group he/she is in.
Dyspraxia:
impaired or painful functioning in any organ.
Early Intensive Behavioural Intervention (EIBI):
a generic term for a program that systematically teaches skills that have been broken down into small steps. Each component of the desired behavior is repeated until the child masters it. Learning is rewarded with an object or activity that the child likes.
Early Social Communication Scales (ESCS):
uses videotaped interactions
to assess joint attention behaviours (a child’s ability to use
nonverbal behaviours to share experiences, objects, or events with
others), behavioural requests (a nonverbal child’s ability to make
requests for help or to get things they want), and social interaction
behaviours (the capacity to engage in playful and happy turn taking
with other people).
Echolalia:
repeating words or phrases heard previously. The echoing may occur immediately after hearing the word or phrase, or much later. Delayed echolalia can occur days or weeks after hearing the word or phrase.
Effectiveness:
a measure of the benefit of a treatment or intervention under usual care conditions (e.g., a doctor's office).
Efficacy:
the measure of the benefit of treatment provided under ideal conditions, such as in a clinical trial. Efficacy studies are designed to answer the question: Does this treatment do more good than harm to people who follow the treatment exactly?
Empirical evidence:
observations that have been recorded and which, when taken together, form the basis of a science. Empirical evidence can be inspected and publicly questioned.
Endogenous opioid peptides: naturally occurring substances that have been implicated in the regulation of pain perception, social and emotional behaviours, and motor activity.
Evidence-based:
refers to the use of best evidence derived from methodologically rigorous, valid research.
Expressive One Word Vocabulary Test (EOWVT):
a test that assesses a child’s English-language vocabulary by asking them to name objects, actions, and concepts pictured in illustrations.
External validity:
a measure of the "real world" applicability of research results, or their generalizability to other settings.
Extrapyramidal effects:
a common side effect of neuroleptic agents (phenothiazines) affecting motor coordination, balance, and movement.
Facilitated communication:
the use of a keyboard by a person with autism. The training begins with simple questions that have predictable answers, and becomes increasingly complex with less physical support from the facilitator. Proponents of this method argued that some people with autism eventually learn to communicate complicated thoughts. It has now been discredited through stringent research.
False belief tasks:
a series of tasks that are used to study theory of mind. They provide a means of discovering whether children understand the relationship between beliefs and behaviour.
Fluvoxamine:
a medication which treats both depressive and obsessive symptoms.
Fragile X Syndrome:
a genetic disorder that shares many of the characteristics of autism. Individuals can be tested for "Fragile X" by having a karyotype (see below).
Functional analysis:
a process of carefully observing behaviour to determine what sets off the chain of events that leads to tantrums or aggression. The goal is to eliminate the trigger so that the problem behaviour is stopped completely, not just reduced in severity.
Functional magnetic resonance imaging (fMRI):
an imaging technique that
can show which parts of the brain are active during specific tasks such
as reading or doing a math problem.
Gaze pattern:
in the study of communication between individuals, the patterns of looking at the other person that has communicative value.
Gene:
originally defined as the physical unit of heredity, it is probably best defined as the unit of inheritance that occupies a specific locus on a chromosome, the existence of which can be confirmed by the occurrence of different allelic forms. Genes are formed from DNA, carried on the chromosomes and are responsible for the inherited characteristics that distinguish one individual from another. Each human individual has an estimated 100,000 separate genes.
Generalized (or global) anxiety disorder:
this disorder is characterized by excessive, prolonged worry and tension about everyday things like work, one1s health, or family and friends.
Gluten-free/casein-free diet:
A diet believed by some to help improve
the symptoms of autism. It involves elimination from the diet of gluten
(a protein found in wheat and other grains) and casein (a protein found
in milk). It is believed, although not proven, that the undigested
portion of these proteins acts like a chemical in the brain producing
symptoms in children with autism.
Gold standard:
a treatment or way of diagnosing a condition, etc., that is widely accepted as being the best available.
Haloperidol:
an antipsychotic medication that is also used to control tics and vocalizations that are part of Tourette's syndrome.
High Functioning Autism (HFA):
individuals with autism who are not cognitively impaired are called 'high functioning'.
Histidinemia:
excess of the amino acid histidine in the blood. Due to deficiency or absence of either of the enzymes, histidase or urocanase.
Hyperlexia:
the ability to read at an early age. To be hyperlexic, a child does not need to understand what he or she is reading.
Hypotonia:
low muscle tone.
Inborn error of metabolism:
the cause in multiple diseases and due to the lack of, or poor functioning, of an enzyme.
Intention to treat
analysis:
a way of analyzing data from a randomized controlled trials in which the results for individuals are analyzed according to which group they were assigned whether or not they remained in the study or whether they received the treatment they were assigned. It is a way of making the results more consistent with real life experiences because, for instance, many people who go to the doctor do not complete their course of medication or treatment.
Internal validity:
a measure of, for example whether it is the intervention responsible for change seen in a research subject rather than some external force, or natural process such as physical or psychological maturation.
International Classification of Diseases of the World Health Organization (ICD-10, currently):
a numerical system used to classify diseases and disorders, including autism. Sometimes used in conjunction with DSM criteria.
Individualized Educational Plan (IEP):
a plan that identifies the student's specific learning expectations and outlines how the school will address these expectations through appropriate special education programs and services. It also identifies the methods by which the student's progress will be reviewed. For students 14 years or older, it must also contain a plan for the transition to postsecondary education, or the workplace, or to help the student live as independently as possible in the community.
Joint attention:
the ability to follow another's gaze and share the experience of looking at an object or activity.
Karyotype:
the complete set of chromosomes of a cell or organism. The DNA from blood is grown in such a manner that the chromosomes can be visualized under a microscope.
Ketogenic diet: a restricted diet thought to help control epileptic seizures. Should be used only under a specialist doctor's supervision.
Leiter International Performance Scale:
a nonverbal assessment of intelligence, used primarily with children with communication difficulties. It gives both an IQ score, and an age equivalent for the child's level of functioning.
Leptin:
a hormone made in fat cells that affects the part of the brain
involved in appetite control.
MacArthur Communicative Development Inventories (MCDI):
Parent report forms used to assess language and communication skills in babies and young children.
Macrocephaly:
the term used to describe the condition of having a head circumference two standard deviations above average, which translates to a clinical definition of greater than the 97th percentile.
Mainstreaming:
placement of a disabled child with non-disabled peers in a regular classroom.
Magnetic Resonance Imaging (MRI):
a diagnostic technique that uses the magnetic qualities of body chemicals to produce an image of the brain.
Mental age: the intellectual ability of a child, as expressed in years and based on comparisons of the child's test performance with the performance of other children with a range of chronological ages.
Mullen Scales of Early Learning:
a comprehensive test of children's motor, perceptual, and language abilities. It helps assess learning styles, strengths, and weaknesses.
Naltrexone hydrochloride:
a drug that reduces the activity or availability of certain chemicals (opioids) in the brain thought to increase self-injurious behavior.
Neuroleptic:
a drug producing analgesia, sedation, and tranquilization or a similar condition.
Neurologist:
a doctor specializing in medical problems associated with the nervous system, specifically the brain and spinal cord.
Neurotransmitter:
a chemical messenger that permits communication between brain or nerve cells.
Neurotypical:
a term used for persons with typical neurological development and function.
New generation anti-psychotic medications/Atypical antipsychotics:
a
group of drugs which are different chemically from the older drugs used
to treat serious mental illnesses. They are called atypical because
they have different side effects from the conventional antipsychotic
agents. The atypical drugs are less likely to cause drug-induced
involuntary movements than are the older drugs. They may also be
effective for some conditions that are resistant to older drugs. The
drugs in this group are clozapine (Clozaril), loxapine (Loxitane),
olanzapine (Zyprexa), quetiapine (Seroquel), and risperidone
(Risperdal).
New variant autism:
a proposed condition in which children deteriorate over time developing autism and an associated bowel disease. It was suggested that this condition was caused by the MMR vaccine. There is no evidence that this condition exists.
Obsessive-Compulsive Disorder (OCD):
having a tendency to perform certain repetitive acts or ritualistic behaviour to relieve anxiety.
Occupational therapist (OT):
individuals who specialize in the analysis of activity and tasks to minimize the impact of disability on activities of daily living. The therapist then helps the family to better cope with the disorder, by adapting the environment and teaching.
Opioid Peptides theory:
the belief that peptides with opioid (morphine-like) activity, resulting from the incomplete digestion of certain foods, in particular gluten from wheat and certain other cereals and from casein from milk and dairy produce, find their way into the bloodstream and thence to the brain where they act to alter the function of neurotransmitters.
Oppositional disorder:
according to the DSM-IV, the behaviours seen in oppositional disorder are:
- violations of minor rules
- temper tantrums
- argumentativeness
- provocative behavior
- stubbornness
Picture Exchange Communication System (PECS):
allows children and
adults with autism and other communication deficits to initiate
communication through the use of a system of picture symbols.
Peabody Picture Vocabulary Test (PPVT):
a test of receptive vocabulary; that is, it tests whether or not young children recognize words and their meaning without them having to say the words.
Perseveration:
repetitive movement or speech, or sticking to one idea or task that has a compulsive quality to it.
Pervasive Developmental Disorder (PDD):
a group of developmental disabilities which are neurological disorders of unknown cause. The symptoms include diminished ability to understand language and to communicate with and to interact with others. Children with a PDD usually have limited interests and engage in repetitive activities. There may be sensory problems related to perception of sound (hypersensitivity or lowered response)
Phenylketonuria (PKU):
an inability to break down the amino acid phenylalanine, which is present in many common foods. Usually associated with a gradual development of mental retardation if a diet eliminating or severely restricting the intake of phenylalanine.
Placebo:
an inactive substance that looks the same as, and is administered in the same way as, a drug in a clinical trial, usually in a double-blinded study. Its purpose is to test whether or not effects seen in participants are actually due to the active medication.
Polymorphism:
the regular and simultaneous occurrence in a single interbreeding population of two or more alleles of a gene, where the frequency of the more rare alleles is greater than can be explained by recurrent mutation alone (typically greater than 1%). The concept includes chromosome polymorphism.
Positron Emission Tomography (PET) scan:
a scanning device that uses low-dose radioactive sugar to measure brain activity.
Pre-post Study:
a research design in which the same tests are given to participants before and after they take part in a study to see if there are any changes that could be attributed to the intervention.
Preschool Language Scale:
a tool used to assess receptive and expressive language skills in infants and young children.
Prevalence:
the proportion of people with a particular condition or disease within a given population at a given time.
Prevalence study:
a study of the rates of a condition in a given population at a given time. Prevalence is determined by the use of surveys, chart reviews, or population studies.
Prognosis:
the possible outcomes of a condition or a disease and the likelihood that each one will occur.
Proprioceptive:
capable of receiving stimuli originating in muscles, tendons, and other internal tissues.
Prospective longitudinal study:
a type of research study in which observations of the same subjects are made over long periods of time, often many years or even decades.
Prospective study:
a study in which groups of people that have been exposed or have not been exposed to an intervention or risk factor of interest are followed forward through time to determine the outcome.
Psycholinguistics:
the branch of psychology devoted to the study of verbal behaviour.
Randomized controlled trial:
a study design in which enrollment into a study is done by random allocation, that is, the patient has no greater likelihood or receiving the treatment or placebo (or the comparison treatment) than could be expected by chance alone. Patients do not receive the treatment or placebo through their own conscious decision or that of the doctor. Randomization helps to reduce the biases that could be encountered if assignment was made by the doctor or by the patient.
Recall bias:
Recall bias refers to the greater tendency of those who have been diagnosed
with a condition to more carefully scrutinize the past and remember details of an exposure to a causative agent or event.
Refrigerator Mother:
slang phrase previously used to describe mothers of autistic children who acted coldly. The phrase was used in descriptions of the Freudian psychological theory of the cause of (infantile) autism.
Responsive Education and Prelinguistic Milieu Teaching (RPMT):
a program designed to help developmentally delayed children who are not
yet talking learn to communicate with others. During play, therapists
use gentle prompting to get the child to interact with them and engage
in joint attention. Children are also encouraged to learn to make
requests.
Retrospective study:
a study design in which cases of a condition or disease of interest are collected and analyzed after they have developed the condition or disease.
Risperdal (generic name: Risperidone):
Risperdal, like other new antipsychotic drugs currently under development, is designed as a serotonin/dopamine antagonist. While its exact mechanism of action is not yet understood, Risperdal seems to block the action of serotonin and dopamine, two neurotransmitter chemicals in the brain. Conventional antipsychotics seem to primarily affect only dopamine.
Risperidone:
a drug used to treat problem behaviours such as
aggression, self-injury, and irritability in children, adolescents, and
adults with autism. The drug works by reducing abnormal excitement in
the brain.
Secretin:
a polypeptide neurotransmitter (chemical messenger), one of the hormones that controls digestion, increasing the volume and bicarbonate content of secreted pancreatic juices.
Selective Serotonin Reuptake Inhibitor (SSRI):
a class of drugs used as antidepressants. Functionally, they increase the levels of serotonin in the body. These drugs can be dangerous if mixed with other drugs such as other antidepressants, illicit drugs, some antihistamines, antibiotics and calcium-channel blockers. Some examples of SSRIs are Prozac, Zoloft, Paxil.
Serotonin:
a neurotransmitter implicated in the behavioural-physiological processes of sleep, pain and sensory perception, motor function, appetite, learning and memory.
Speech-language pathologist:
individuals who specialize in the area of human communication. The focus in on communication, not speech, to increase the child's ability to impact and to understand their environment.
SPELL:
an acronym for Structure, Positive (approaches and expectations), Empathy, Low arousal, and Links, the framework used in UK schools to design programs that recognize individual needs of child and adult participants. (click here for more info)
Stanford-Binet Intelligence test:
a test that assesses intelligence and cognitive abilities in children and adults aged two to 23. It is used in determining the presence of a learning disability or a developmental delay.
Stereotypy(ies):
the constant repetition of certain apparently meaningless movements or gestures, e.g., rocking or head banging.
Stim:
short for 'self-stimulation', a term for behaviours whose sole purpose appears to be to stimulate ones senses. Many people with autism report that some 'self-stims' may serve a regulatory function for them (i.e., calming, increasing concentration, or shutting out an overwhelming sound).
TEACCH:
an intervention for children with autism and other communication disorders. It involves use of an evaluation tool to assess a child and help create individualized programming for him/her. A major goal of TEACCH is to promote independent learning.
Theory of Mind:
the ability to understand that others have beliefs, desires, and intentions that are different from one's own.
Time Series:
a research design in which subjects are tested at different times during the course of a long-term study.
Tourette's Syndrome:
both multiple motor and one or more vocal tics present with tics occurring many times a day, nearly daily, over a period of more than one year. The onset is before age 18 and the disturbance is not due to direct physiological effects of a substance or a general medical condition. The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.
Tuberous sclerosis:
a neurocutaneous disorder characterized by mental retardation, seizures, skin lesions, and intracranial lesions. It is caused by a dominant gene and occurs in 1 in 7000 births.
Vineland Adaptive Behavioural Scales (VABS):
a scale that assesses personal and social abilities of individuals from birth to adulthood. These scales are applicable to handicapped and nonhandicapped individuals.
Wait List Control Group:
a comparison group composed of research participants assigned to a waiting list in order to receive an intervention after the active treatment group does.
Wechsler Intelligence Scale for Children (WISC-III):
an individually administered clinical instrument for assessing the intellectual functioning of children.
Wechsler Preschool and Primary Scale of Intelligence - Revised (WPPSI-R):
a clinical instrument similar to the WISC-III and the WAIS-R, except for children ages 3-0 to 7-0.
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