The Autism Spectrum in the 21 st Century: Exploring Psychology, Biology and Practice Glossary

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1 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice Glossary This glossary has been compiled by Ilona Roth with Rosa Hoekstra, Greg Pasco and Chris Barson. AAC See Augmentative and Alternative Communication. action potential The sudden change in a neuron from the resting state to an outburst of electrical activity and back to the resting state. active but odd One of four styles of social interaction which, according to Lorna Wing, may be characteristic of adults on the autism spectrum. The adult seeks people out and tries to make contact, but their approaches tend to be inappropriate. For instance, they may talk at great length about their special interest, regardless of relevance or interest to others or come up too close to other people. (See also aloof; passive and friendly; overly formal and stilted.) ADHD See attention-deficit hyperactivity disorder. ADI See Autism Diagnostic Interview. ADOS See Autism Diagnostic Observation Schedule. adult-directed A broad term for a class of interventions in which an adult decides which approach skills are targeted for development or enhancement. This contrasts with child-centred approaches. (See also child-centred approach.) aetiology The study of causes of, or factors contributing to, a particular condition or disorder. affective Emotional. allele A different form or variant of a gene. aloof One of four styles of social interaction which, according to Lorna Wing, may be characteristic of adults on the autism spectrum. The adult avoids interaction with others, remaining withdrawn and apparently unaware of the existence of others. (See also active but odd; passive and friendly; overly formal and stilted.) amygdala An almond-shaped structure in the brain located under the cerebral hemispheres. It has an important role in emotion and in regulating associated behavioural responses such as flushing, trembling or sweating when frightened. AQ See autism-spectrum quotient. AS See Asperger syndrome. ASC See autism spectrum conditions. ASD Asperger syndrome (AS) See autism spectrum disorders. A sub-type within the autism spectrum. Asperger syndrome differs from classic autism in that communication difficulties are less pronounced (e.g. early speech milestones are normal) and IQ is in the normal or above normal range. Asperger syndrome currently has its own diagnostic criteria in DSM-IV and ICD-0. Copyright 00 The Open University

2 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice association studies Studies that test whether a particular allele is associated with a condition or trait. Most commonly, association studies compare the frequency of a particular gene variant in cases (e.g. individuals with autism) with the frequency of this gene variant in controls. If the allele is more frequently found in cases than controls, this gene variant may constitute a risk factor for the condition. Association studies can either test the role of particular candidate genes (see also candidate genes), or scan the whole genome attention-deficit hyperactivity disorder (ADHD) atypical autism Augmentative and Alternative Communication (AAC) autism Autism Bill Autism Diagnostic Interview (ADI) Autism Diagnostic Observation Schedule (ADOS) autism-friendly school autism spectrum (see also genome-wide association study). A condition characterised by persistent and pronounced overactivity and difficulty in attending. In the DSM-IV-TR diagnostic system, this term is used interchangeably with PDD-NOS, in relation to individuals with autistic-like symptoms, who do not meet the strict criteria for autistic disorder (the DSM-IV-TR term for classic autism.) In ICD-0, atypical autism is defined more specifically in relation to atypically late onset of autistic symptoms, or the absence of one or more typical symptoms. (See also PDD-NOS.) A collective term for systems offered as an alternative or supplement to speech, which aim to enhance a child's communication by the use of simplified vocabulary, clear structure and visual aids such as pictorial symbols. (See also Blissymbols; PECS.) Neurodevelopmental condition(s) characterised by moderate to profound difficulties in communication and social interaction, and repetitive activities and interest. The term autism is used both specifically for the 'classic' form of the condition, and collectively for the spectrum of related difficulties. (See also classic autism; autism spectrum; autism spectrum disorder.) Draft legislation aimed at enhancing services and support for adults on the autism spectrum. In 009 the draft proposals passed through all stages of the English parliamentary scrutiny process, and became the Autism Act 009. This Act requires both national and regional government in England to address the serious needs of adults with autism as set out in the Bill. An interview designed for use with the parents of children or adults who are being assessed for an autism spectrum diagnosis. The ADI comprises questions about current skills and behaviours, as well as how these behaviours were manifested at age four to five years or at any point during development. An interactive assessment tool used in making autism spectrum diagnoses. It consists of four separate modules, each comprising tasks designed for use with children of different ages and different levels of development and language. An educational environment that works with and around the special difficulties in autism and their implications for schooling. Features include specialised staff, staff training and briefing, liaison with parents and local service providers and adaptations to the school curriculum and physical environment. Term first introduced by Lorna Wing to evoke variation in the expression of autistic symptoms across individuals and sub-groups. The autism spectrum is treated both as a continuum of variation between individuals, and as a collection of diagnostic sub-types, including classic autism, Asperger syndrome and PDD-NOS. 9 Copyright 00 The Open University

3 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice autism spectrum conditions (ASC) Term used by some professionals and some families as a more acceptable description of the autism spectrum than autism spectrum disorders. (Seealso autism; autism spectrum disorders; autism autism spectrum disorders (ASD) autism-spectrum quotient (AQ) autistic disorder autistic traits average spectrum.) Term used in formal diagnosis, and by many professionals in the context of clinical practice to refer the autism spectrum and its sub-types. (See also autism; autism spectrum conditions; autism spectrum.) A questionnaire-based measure of autistic-type traits devised by Simon Baron-Cohen and colleagues. A person's AQ score is derived by scoring their answers to questionnaire items concerning the way they react to other people, social situations and physical entities. Any individual may be scored on this measure. Those with an autism spectrum diagnosis are predicted to score at the extremely high end of the range of scores for a population. A formal term for classic autism introduced into the DSM (Diagnostic and Statistical Manual) in 98. In the ICD diagnostic system, the corresponding term is childhood autism. (See also classic autism; childhood autism.) Psychological or personality characteristics typically associated with autism, such as being withdrawn, emotionally detached, or obsessed with particular objects or interests. They do not necessarily mean that the person meets the diagnostic criteria for autism. (See also broader autism phenotype.) An average is the single middle value used to represent a set of observations or measurements. Most often the average is the mean of the measurements, calculated by adding all the measurements together and dividing by the number of measurements taken. awareness of self The capacity to be aware of one s own inner states, experiences and 9 characteristic ways of engaging with the world. axon The part of a neuron that sends signals to other cells (output). BAP See broader autism phenotype. bar chart A form of visual representation of data similar to a graph and widely used in scientific research. Bars set out along the horizontal axis are used to represent different groups of participants and/or different sets of observations. Bars of different heights represent different scores on a variable which is represented by the vertical axis. For instance, in the evaluation of an intervention for autism, one pair of bars may be used to represent the scores of intervention and control groups on the outcome variable before the intervention, while a second pair of bars represents the scores of these two groups after the intervention. base or unit within a mainstream school baseline period A separate division within a mainstream primary or secondary school which provides some specialised classes for students with a disability such as autism. The students join classes in the mainstream school when appropriate and are educated in the base or unit for the rest of the time. This definition refers to the UK but similar provision exists in some other countries. (See also mainstream school.) The period prior to introduction of an intervention within a multiplebaseline study. Measurements of participants' behaviour during the baseline period are compared with those made after the intervention, to evaluate whether the intervention has had any effect. (See also multiplebaseline study.) 9 Copyright 00 The Open University

4 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice basic emotions Usually applied to six emotions happiness, sadness, anger, fear, disgust and surprise. These emotions are said to evoke characteristic facial expressions that are universally expressed and recognised across cultures. Research studies differ as to whether people on the autism spectrum have difficulty recognising basic emotions. (See also complex emotions.) behaviour modification The application of principles of learning and conditioning to influence or improve a person's behaviour, by eradicating maladaptive behaviours and learning new ones. Based on the work of B.F.Skinner, and pioneered behavioural interventions biological perspective blind rating Blissymbols block design bonding broader autism phenotype (BAP) bullying calendrical calculation CAMHS candidate gene case history in the autism field by Ivar Lovaas. A broad term for the class of interventions that employ principles of learning such as operant conditioning to bring about changes in a child or adult's behaviour. Behaviour deemed desirable is rewarded or reinforced, while unwanted behaviour is reduced or extinguished. These approaches are adult-directed. (See also adult-directed approach; behaviour modification; operant conditioning.) Seeking to understand and explain aspects of human behaviour in terms of biological concepts and theories. A procedure to ensure that when a researcher evaluates or interprets observed behaviour, their judgements are not influenced by expectations about how the individuals being observed should behave. In autism research, for instance, the researcher making the observations may not be told whether or not the individuals being observed have autism diagnoses. Aform of Alternative and Augmentative Communication employing a system of pictorial symbols, and used to help children with poor verbal communication. Each symbol represents a concept and can be combined with others to represent further concepts. (See also Augmentative and Alternative Communication.) A sub-test within a non-verbal intelligence (IQ) test, in which the participant is asked to arrange some coloured blocks to copy a geometric pattern. (See also intelligence tests.) The development of a close emotional relationship between family members or friends. Bonding is a mutual, interactive process involving reciprocity or 'give and take'. In typical development, bonding between infant and mother is thought to develop from birth onwards. (See also reciprocity.) Milder manifestations of traits characteristic for autism in relatives of people with autism. Verbal or physical intimidation or maltreatment of somebody weaker or in a more vulnerable situation. Bullying causes fear, distress and often has long-term effects. The highly specialised ability to work out what day of the week it was on a randomly chosen and distant date such as 0 January 809. (See also savant syndrome.) See Child and Adolescent Mental Health Service. A gene whose function, or location on a chromosome, suggests that it might be associated with a condition or disorder. A detailed account of facts relevant to the development of an individual's problems or situation. The material is structured and organised as an informative record for use by a psychiatrist, psychologist, social worker etc. Copyright 00 The Open University

5 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice case study In-depth observation and description of the specific characteristics of a selected individual. Pooling of case study material across individuals may permit identification of general features. The method is used by clinical practitioners, and in some forms of research. CDC See Child Development Centre. cell body The main part of a neuron where the information is processed. (See also axon; dendrite.) central coherence Focusing on overall form and meaning rather than fine detail when processing information from the environment. This has been considered as both a perceptual phenomenon (seeing whole figures, or hearing whole patterns of sounds) and a conceptual phenomenon (processing the meaning or gist from spoken or written language). A key theory of autism suggests that central coherence is lacking in people on the autism spectrum, though this is now proposed as a cognitive style rather than a fixed deficit in processing information. (See also weak central coherence; cognitive style.) cerebellum A structure in the brain located under the occipital lobe of the cortex. It plays an important role in the control of motor movements, posture and balance. It is particularly important in movements with a social function, such as gestures and expression. cerebral cortex The outer layer of the brain. cerebral The brain is divided into two approximately symmetrical halves, referred hemispheres to as the left and the right cerebral hemispheres. CFCS See Child and Family Consultation Service. challenging behaviours Behaviour of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy and/or access to and use of ordinary community facilities is impeded. CHAT Checklist for Autism in Toddlers (CHAT) chelation Child and Adolescent Mental Health Service (CAMHS) Child and Family Consultation Service (CFCS) child-centred approach Child Development Centre (CDC) See Checklist for Autism in Toddlers. One of the first tools developed for the screening of autism in preschool children. It was originally designed to be administered at a routine developmental assessment of children at 8 months of age, carried out by health visitors or GPs. Key items include questions about pointing, shared attention and pretend play. An intervention which involves injecting people with autism with agents that reduce the levels of heavy metals such as lead and mercury. Considered very hazardous. A service within the National Health Service in the UK, which provides assessment and treatment for young people with mental health and psychiatric difficulties. A UK service to which children and adolescents, and their family members, may be referred if there are problems with behaviour or development at school or at home. A broad term for the class of interventions which involve following the child's own interests and motivation as a means of encouraging interaction and learning. This contrasts with adult-directed approaches. (See also adult-directed approaches.) Child Development Centres carry out thorough assessments of children who appear to have developmental problems. Social Communication Clinics within CDCs specialise in assessing children with language and communication difficulties. (See also Social Communication Clinic.) Copyright 00 The Open University

6 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice childhood autism A formal term for classic autism within the ICD diagnostic system. In the DSM diagnostic system, the corresponding term is autistic disorder. (See also classic autism; autistic disorder.) chromosome Structural unit in all living cells, composed of long strands of DNA on which genes are found. (See also DNA; X and Y chromosomes.) chronological age A person's age in years and months. In psychological tests, a person's chronological age is often considered alongside their mental age. classic autism The term classic autism is often used to differentiate the prototypical form of autism, with full expression of the characteristic triad of impairments, from other sub-types of autism such as Asperger syndrome. (See also autism; Asperger syndrome.) clinical A psychologist with specialist qualifications and experience in the use of psychologist psychological methods and theories to help people of all ages who have learning disabilities or mental health problems, such as depression or anxiety. Unlike psychiatrists, clinical psychologists do not have to be medically qualified. co-morbidity A medical term for the presence of one or more conditions or disorders alongside a primary condition. In autism, epilepsy is a common co-morbid condition. codes Words, phrases or symbols that provide concise summaries of information. In psychological research coding (the use of codes) is employed to provide informative short-hand headings for rich data such as spontaneous behaviour, spoken or written language. cognition The mental processes involved in thinking, understanding and using language, planning activities and solving problems. cognitive style A strategy or preference affecting the way a person processes information, emphasising that there is scope for the individual to control what they attend to and select. The idea that attention to detail or weak central coherence is a cognitive style in autism contrasts with the earlier claim that this is a fixed and immutable bias. (See also central coherence; weak central coherence.) complex emotions Emotions such as embarrassment, shame and pride. Typically these emotions cannot be recognised from a person's facial expression alone, but require the integration of other sources of information, especially the context in which the emotion has arisen. For instance, to recognise that a person is feeling embarrassed, it may be necessary to know that they have done something that would cause them to feel this way (See also comprehensive approaches concordance concordance rate basic emotions.) Interventions, also known as integrated approaches that aim to help and support individuals on the autism spectrum across many key aspects of functioning, including learning, behaviour, social and communication needs. These approaches are called comprehensive because they address a broad range of skills and deficits, and also because they may be used in different settings (at home, school, in respite services and other locations), as well as across the lifetime of the individual. Examples are TEACCH, Lovaas and the Son-Rise programme. The occurrence of the same (or similar) condition, characteristic or trait in both members of a pair of twins. The proportion or percentage of cases in which both members of a pair of twins show the same (or similar) condition, characteristic or trait. Copyright 00 The Open University

7 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice confounding An extraneous variable in a research study or clinical evaluation that factor varies between groups or conditions in such a way that the influences responsible for observed effects on outcomes are unclear. For instance, if participants receiving an intervention are high-functioning, while those not receiving the intervention are low-functioning, differences in outcomes may be due to this rather than to the effects of the intervention. connectivity The connections between different parts of the brain and how well they communicate. control group A group of participants in an experiment or other systematic study which differs from the experimental group in not having a characteristic of interest, or not receiving a 'treatment' which the experimental group receives. For instance, the control group may be typically developing individuals, while the experimental group has autism spectrum diagnoses; alternatively the control group and experimental group may both have similar characteristics but be presented with different stimuli or task conditions in an experiment. (See also experiment; experimental group.) core deficit models correlations cortex cross-sectional studies Daily Life Therapy de novo mutation Models that assume that a single underlying problem or deficit accounts for the wide range of behavioural and psychological difficulties that are observed in autism. A correlation is a statistical relationship between two variables. A correlation of means that the two variables are perfectly correlated, a correlation of 0 means that the two variables bear no relationship at all. See cerebral cortex. Studies that collect information in individuals at only a single point in time. These contrast with longitudinal studies in which individuals are followed over time to track their development. (See also longitudinal studies.) A whole school approach to children with autism originally developed in Japan, and now also practised in Higashi schools in the UK and USA. Educational goals include independence in daily life skills, improved awareness of body and behaviour and group participation. (See also whole school approach.) Literally a 'new' mutation: a new genetic variant that neither parent possessed nor transmitted which is expressed for the first time in the offspring. deletion A type of genetic mutation in which a sequence of DNA has been lost. A deletion is the opposite of a duplication. (See also duplication; mutation.) dendrites The parts of a neuron that receive signals from other neurons (input.) deoxyribonucleic See DNA. acid Department for Education and Skills (DfES) A UK government department with responsibility for all issues affecting people up to the age of 9 including child protection and education. In England this is now the Department for Children, Schools and Families dependent variable (DCSF.) A variable which is observed to vary under the influence of another variable. In experimental research, the experimenter manipulates or changes one variable (the independent variable) in order to observe the effects on another variable (the dependent variable.) For instance, the experimenter might observe how different characteristics between an experimental and a control group influence the scores achieved by the two groups on a memory test. (See also outcome measure; variable.) Copyright 00 The Open University

8 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice Developmental, Dimensional and Diagnostic interview (Di) An interview designed for use with the parents of children or adults who are being assessed for an autism spectrum diagnosis. The format of the Di is similar in structure to the ADI, but uses computer analysis of the responses in an attempt to reduce the time burden on clinicians. Like the DISCO, the Di offers a dimensional framework, allowing for graded evaluation of how far the individual matches the criteria for a pervasive Developmental, Individualdifference, Relationshipbased (DIR) developmentalpragmatic approaches developmental trajectory DfES Di Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnostic criteria Diagnostic Interview for Social and Communication Disorders (DISCO) DIR DISCO discrete trial procedures developmental disorder. (See also ADI; DISCO.) A developmental-pragmatic intervention, intensely child-centred, and based on the idea that children on the spectrum do not connect social and emotional knowledge to their developing motor and symbolic skills. The intervention involves following and imitating the child's actions using sensorimotor techniques such as swinging or physical pressure, and presenting the child with challenges to be overcome by gestures or verbal communications. Also known as Floortime. (See also child-centred approach; developmental-pragmatic approaches.) A class of interventions, also known as social pragmatic approaches, based upon an understanding of typical developmental processes, particularly in relation to early social communication and interaction skills. A term for the developmental sequence. This emphasises two facets of typical development: () There is a characteristic sequence of 'milestones' such as crawling, sitting up and walking. () Early developmental skills such as pointing and looking are thought to lay the foundations for later more sophisticated skills such as play with siblings, friendships with peers, or the complex relationships of the teenage years and adulthood. The idea of an atypical developmental trajectory is an important concept in work on autism. See Department for Education and Skills. See Developmental, Dimensional and Diagnostic interview. The American Psychiatric Association's formal system for the classification and diagnosis of psychiatric conditions, mental health problems and psychological disability. The diagnostic criteria and guidelines are revised periodically, the current version, DSM-IV-TR, being shortly due for replacement by DSM-V. (See also diagnostic criteria; ICD.) Formal descriptions of medical and psychiatric conditions, used in making diagnoses. The criteria comprise a list of symptoms or features that an individual must have for a condition or problem to be diagnosed, and in some cases specify additional symptoms that should not be present. An interview designed for use with the parents of children or adults who are being assessed for an autism spectrum diagnosis. The interview offers a 'dimensional' framework, allowing for graded evaluation of how far an individual matches the criteria for a pervasive developmental disorder, as defined in the ICD and DSM systems. (See also ADI; Di.) See Developmental, Individual-difference, Relationship-based. See Diagnostic Interview for Social and Communication Disorders Procedures originating within the operant conditioning framework, and employed within the Lovaas approach to intervention. They involve analysing a child s behaviour into components that can be individually tackled using operant conditioning and reinforcement. (See also operant conditioning; Lovaas approach.) Copyright 00 The Open University 8

9 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice dizygotic (DZ) twins Twins that are the product of two different eggs that were fertilised by two different sperm cells. Dizygotic twins are genetically non-identical and can therefore be of same sex or opposite sex. They are genetically no more similar than non-twin siblings. (See also identical twins; twin DNA (deoxyribonucleic acid) Down syndrome DSM duplications E-S theory EarlyBird echolalia eclectic approach ecological validity EEG EF effectiveness study efficacy study electroencephalo graphy (EEG) embedded figures test empathising quotient (EQ) method.) Molecules in the cell that contain the instructions necessary in the development and functioning of all living organisms. Sections of DNA form genes. A disorder caused by chromosome abnormality and usually involves a degree of intellectual disability, together with characteristic physical features, and sometimes medical problems. See Diagnostic and Statistical Manual of Mental Disorders. A type of genetic mutation in which a sequence of DNA is present in two or more copies on the chromosome. A duplication is the opposite of a deletion. (See also deletion; mutation.) See empathising-systemising (E-S) theory. A three-month education programme providing support and encouragement and promoting good practice for parents of newly diagnosed (preschool) children on the autism spectrum, run by the National Autistic Society. (See also Hanen.) The repetition of words, phrases or sentences just spoken by others, in a 'parrot-like' fashion. Echolalia is common in individuals on the autism spectrum, and also occurs in conditions such as schizophrenia and Tourette's syndrome. In autism, the repetition may be immediate or delayed. The use of a combination of different interventions to support people with autism in real-life settings such as the classroom or adult service. The extent to which an experiment or other research task mirrors a reallife situation. Ecological validity can refer to features such as the type of stimuli used, the responses that participants are required to make, or the context in which the study is conducted. See electroencephalography. See executive function. An evaluation of an intervention carried out under real-world or everyday conditions, e.g. the intervention is delivered by parents in the child's home environment. An evaluation of an intervention carried out under ideal conditions, e.g. by highly trained specialists. A procedure used in research and clinical practice, in which several electrodes are attached to the scalp of the participant. These electrodes measure the electrical activity that is produced by the neurons in the brain. A test of the capacity to identify an individual component or shape from a pattern in which it is embedded. A questionnaire devised by Baron-Cohen and colleagues to measure levels of empathising or empathy. The assumption underlying the test is that empathising is a dimensional or continuous trait. Each member of a population can receive a low, high or average score on empathising; on average, males are predicted to score lower than females; people on the autism spectrum are predicted to score very low on empathising. (See also empathising-systemising theory; systemising quotient.) 8 Copyright 00 The Open University 9

10 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice empathisingsystemising A theory formulated by Baron-Cohen, which proposes that autism is (E-S) theory characterised by poor empathising ability, combined with enhanced systemising. (See also empathy; empathising quotient; systemising; systemising quotient.) empathy Broadly defined as the capacity to understand and 'enter into' another person's emotions. Different researchers employ this term in related but slightly different ways. For Hobson, empathy involves a direct and intuitive feeling 'for and with' another person, which will typically include feeling the same emotion the other person feels. For Baron-Cohen, empathy, or empathising, involves two separable components cognitive: recognising what someone else is feeling and affective: experiencing an appropriate reaction, e.g. feeling sad yourself or trying to comfort someone. Research suggests that empathy is impaired in autism. epidemiological study epilepsy EQ evidence base evidence-based practice excitatory exclusion executive function (EF) experiment Study of the factors determining and influencing the frequency and distribution of disease, injury and other health-related events and their causes in a defined human population. Estimating the prevalence of the condition in question is often an important part of an epidemiological study. (See also prevalence.) A group of neurological disorders characterised by recurrent seizures, which reflect abnormal or excessive activity in one or more brain area. Seizures may be accompanied by uncontrollable jerking and temporary loss of consciousness. See empathising quotient. The quantity and quality of available evidence concerning the efficacy and/or effectiveness of an intervention. (See also evidence-based practice; efficacy study; effectiveness study.) The approach which emphasises that interventions and other clinical applications must be based on sound empirical research findings, i.e. there must be a good evidence base for them. The approach is widely advocated in clinical psychology. (See also evidence base.) When a neurotransmitter induces an action potential in a postsynaptic neuron or increases the existing activity of this neuron, the effect is said to be excitatory. An order that temporarily or permanently excludes a child from their usual school. A collective term for cognitive capacities such as planning, flexibly transferring attention from one activity to another, inhibiting inappropriate responses in order to stay 'on task', and generating new activities and ideas. (See also planning; mental flexibility; inhibition; generativity.) Method used throughout the natural and social sciences to gather evidence relevant to explaining particular phenomena. Typically an experiment involves (a) testing a hypothesis by systematically manipulating (varying) one variable, known as the independent variable, and measuring the effects on another variable, known as the dependent variable; (b) controlling all sources of variation except the ones under study, so that the effects of the first variable on the second can be clearly inferred. Psychological experiments frequently involve comparing one group of participants (the experimental group) against a control group. (See also dependent variable; hypothesis; variable.) Copyright 00 The Open University 0

11 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice experimental group A group of participants in an experiment or other systematic study, defined in terms of a characteristic of interest and/or a 'treatment' that distinguishes this group from the control group. For instance, participants in the experimental group may have autism spectrum diagnoses, while participants in the control group do not; alternatively both experimental group and control group may have similar characteristics but be presented with different stimuli or task conditions in an experiment. (See expressive language extreme male brain theory false belief test falsifiable also experiment; control group.) Language that a person produces, typically in written or spoken form. Difficulty with expressive language means that the person has delay and/or difficulty in producing language. The person's spoken language will be sparse in vocabulary and/or grammatically and syntactically incorrect. The person is likely to have difficulty in putting thoughts into words, and in using language appropriately in different settings. Difficulty with expressive language is common on the autism spectrum, and is often accompanied by receptive language difficulty. (See also receptive language.) An extension of Baron-Cohen's empathising-systemising theory which claims that the cognitive profile in autism, characterised by an unusually high score on systemising and an unusually low score on empathising, is an accentuated version of the typical profile for males. This has led Baron-Cohen to link autism to high levels of the 'male' hormone, testosterone. An experimental test of the ability to understand that another person's belief about a situation may be false, that is, different from reality. Used as test of theory of mind in people on the autism spectrum. The classic false belief test for children is known as Sally-Anne. Refers to the need for a theory to be formulated such that it is in principle possible to prove that it is incorrect. A theory which is not falsifiable is likely to have little explanatory power. firing Neuronal signalling via the axons of these cells Floortime Another term for Developmental, Individual-difference, Relationshipbased (DIR). See definition for that term. fmri See functional magnetic resonance imaging. follow-up studies Studies in which the characteristics of a group of individuals are tracked over an extended period of time, in order to evaluate progress and development. For instance, the symptoms and intellectual functioning of a group of autistic children may be re-assessed in adulthood. fragile X syndrome Freudian psychoanalysis frontal lobe full-scale IQ A genetic disease syndrome caused by an expansion of a sequence of the FMR gene located on the X chromosome. It is the second most common cause of intellectual disability in males. A theoretical and therapeutic framework developed by Sigmund Freud, considered the founding father of psychoanalysis. A lobe of the cerebral cortex. It is concerned with articulation of speech, movement, emotions and problem solving. It is also important for executive functions, such as reasoning and planning. Called 'frontal' because it is located towards the front of the brain. The overall score that a person achieves on an intelligence test, reflecting a mean of their verbal and performance IQ. (See also intelligence quotient.) Copyright 00 The Open University

12 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice functional A variant of MRI scanning that offers insight into the brain at work. fmri magnetic resonance imaging (fmri) can give very detailed information about the location of the brain activity, but is limited to changes that take place over about a second. (See also imaging; magnetic resonance imaging.) fusiform gyrus A part of the brain in the temporal lobe, known to play an essential role in recognising faces and for differentiating between different faces, objects GABA (gammaaminobutyric acid) generalisation generativity genes genetic genetic counsellors/ counselling genetic heterogeneity genome-wide association study glutamate grammar graph grey matter and emotions. A neurotransmitter that plays an important role in early brain development. It primarily has an inhibitory effect in the brain. The carrying over of a skill or response to a different situation or context, e.g. one that is more complex, more real-life or involves interacting with different people. The capacity to generate new activities and ideas. A component of executive function. (See also executive function.) Genes are small sections of very long molecules of deoxyribonucleic acid (DNA.) Genes contain the codes for proteins, which are in turn necessary in the development and functioning of all living organisms. Refers to the influence of genes on a condition or trait (physical, psychological, etc.) An educational counselling process for individuals and families who have a genetic condition or disorder or who are at risk for such a condition/disorder. Genetic counselling is designed to provide patients and their families with information about their condition and about the risks that further offspring may also be at risk of developing the disorder. Given the current state of knowledge about genetic factors in autism, genetic counselling cannot provide a definitive risk assessment. The notion that a single condition or disorder may be caused by different genes. Autism is genetically heterogeneous: the set of genes involved in causing autism in one individual is likely to be different from the set of genes involved in autism in another individual. Autism is also polygenic: in a given individual, the condition is likely to be influenced by the combined effects of multiple genes. (See also polygenic.) An association study that systematically assesses DNA variation throughout the genome. A neurotransmitter found throughout the brain. Glutamate has an excitatory effect on the postsynaptic neuron and is thought to be crucial in neural plasticity and in cognitive functions such as learning and memory. A set of rules that govern the composition of sentences, phrases, and words in a given language. Each language (English, French, etc.) has its own grammar. (See also syntax.) A visual diagram showing the relationship between two or more variables (for instance height and age) which are plotted against each other. Typically, the basic framework of a graph is a vertical line or axis (the 'y'- axis) crossing or joining a horizontal line (the 'x'-axis) to form an L shape or a cross. The y-axis shows the possible values of one variable, while the x-axis shows the possible values of the other variable. Observations of the relationship between the two variables are plotted as the coordinates of the two sets of values. Refers to the cortical regions of the brain. Because the cortex has such a high density of cell bodies, it has a relatively dark colour. (See also white matter.) 8 Copyright 00 The Open University

13 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice gyrus The smooth areas of the cortex between foldings, which form a crown, are termed gyri (singular term is gyrus.) Hanen An education programme developed in Canada in which parents and 8 other care-givers of children on the autism spectrum learn techniques for promoting children s communication and language development during everyday activities. (See also EarlyBird.) health visitor A qualified nurse or midwife, who works in the community, providing advice and help on health matters, especially to parents with young children. heritability The extent to which a condition or feature can be attributed to genetic influences. If a condition is highly heritable it means that parents are likely to pass on the condition to their child(ren) through their genes. HFA See high-functioning autism. high-functioning A term used by some specialists to describe cases of autism where the autism (HFA) individuals full-scale IQ scores are above 0. HFA is not a formal diagnostic category: the term is used in everyday situations and research. The difference, if any, between HFA and Asperger syndrome is a matter of debate. (See also low-functioning autism; Asperger syndrome.) horizontal axis The horizontal dimension of a graph. Also known as the 'x'-axis. (See also graph.) hormone Type of chemical that has a major role in transmitting signals around the body. human genome All the hereditary information carried within each human cell. human primacy Refers to the observation that from birth onwards infants engage with other humans in ways which are distinct from how they engage with nonhumans and the physical world. hypothesis A proposed explanation for an observed phenomenon, which is tested using the experimental method. Typically the hypothesis will predict the outcome that will occur if one variable has an effect on, or relationship to, another. (See also experiment; variable.) ICD See International Classification of Diseases. idiopathic A term used to describe conditions or disorders which are of unknown cause. IEP See Individual Education Plan. imaging Collective name given to any of a number of techniques that allow a computer-generated image of a living brain or other internal body structure to be produced. (See also fmri; MEG; MRI.) incidental teaching inclusion A naturalistic intervention harnessing naturally occurring interactions between an adult and a child in contexts such as free play. These opportunities are used by the adult to transmit information or give the child practice in developing a skill. The aspiration that all children, regardless of disability, religion, ethnic group or other differences, should have the opportunity to learn, achieve and participate fully in the life of their school. In relation to disabilities such as autism, inclusion is quite often interpreted to mean the right of a child to be educated in their own community, alongside other children of the same age without disabilities thus in the mainstream. However, this environment may not necessarily provide the most inclusive experience for a child on the autism spectrum. Copyright 00 The Open University

14 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice independent school A mainstream, special or residential school, also known as a nonmaintained school, which is not funded by the local authority and is therefore fee-paying. Parents may opt to educate a child at their own expense, or seek local authority funding to support their child's education. This definition refers to the UK but similar provision exists in some other countries. (See also mainstream school; special school; residential Individual Education Plan (IEP) inhibition school.) A plan designed to support and enhance the educational progress of an individual child by specifying short-term targets and strategies, tailored to the specific educational needs of the child. Suppressing or inhibiting inappropriate responses in order to stay 'on task'. A component of executive function. (See also executive function.) inhibitory When a neurotransmitter decreases the level of existing activity in a postsynaptic neuron, the effect is said to be inhibitory. innate Characteristics that are present before or at birth. integrated approaches An alternative term for comprehensive interventions. See definition for that term. intellectual Marked difficulty in tasks involving thinking, logical reasoning and disability problem solving. Usually defined as an IQ score less than 0. intelligence quotient (IQ) intelligence tests (IQ tests) inter-rater reliability International Classification of Diseases (ICD) intervention group interventions intonation The score that a person achieves on an intelligence test standardised by comparison with the scores of other individuals within the same age range. Some intelligence tests include a separate verbal and performance intelligence quotient. In this case, their full-scale intelligence quotient is the mean of these two. Standardised tests used to provide an objective measure of a person's intellectual abilities, as compared with the average for the population. The person receives an intelligence quotient (IQ score) based on their performance on tests of intellectual ability including acquisition of concepts and information, problem solving and logical reasoning. One widely used system includes verbal tests such as vocabulary, comprehension and general knowledge, and performance or non-verbal tests, such as block design and picture completion. (See also block design; picture completion; intelligence quotient.) An estimate of the extent to which two or more researchers, working independently of one another, agree in the way they rate or interpret observed behaviour. Inter-rater reliability is an important step in quantitative observational research. (See also observational method; quantitative method.) The World Health Organisation's formal system for the classification and diagnosis of physical disorders, psychiatric conditions, mental health problems and psychological disability. The diagnostic criteria and guidelines are revised periodically; the current version, ICD-0, is due for replacement in 0. (See also diagnostic criteria; DSM.) The group receiving an intervention in a study evaluating its efficacy or effectiveness. The intervention group is equivalent to the experimental group in a research study, and is compared with a control group which does not receive the intervention. Procedures for supporting and improving the health and functioning of someone with a clinical problem such as autism. The characteristic rise and fall of speech, which plays a role in communication, and may be atypical in people on the autism spectrum. Copyright 00 The Open University

15 The Autism Spectrum in the st Century: Exploring Psychology, Biology and Practice intuitive physics Everyday insights into the forces governing physical objects, the implication being that these insights are acquired relatively spontaneously, rather than being the result of education. A test of intuitive physics devised by Baron-Cohen and colleagues has been used to demonstrate that people on the autism spectrum may be good systemisers, i.e. highly attuned to physical systems. (See also systemising; empathising-systemising theory.) intuitive understanding A direct or spontaneous understanding of other people, which does not depend on conscious processes of working out their thoughts and feelings. (See also empathy.) IQ ironic joint attention language Learning Support Assistants LFA linkage analysis local authorities longitudinal studies Lovaas approach low-functioning autism (LFA) MA MAA See intelligence quotient. Irony is the use of an expression or phrase to mean something different from or opposite to what it normally means. Being ironic means speaking with irony. The phenomenon in which one person coordinates or shares their attention with another, in order to focus on the same object or event. Joint attention emerges in typically developing children by about months of age. Children later receiving autism spectrum diagnoses show poor joint attention skills. (See also protodeclarative pointing.) Narrowly defined, language is a system of sounds, signs or written items (letters, word fragments and words), together with rules for combining these elements in ways that convey meaning to others who share a knowledge of this language. Learning support staff, also known as Teaching Assistants, who work alongside teachers in the classroom, helping students progress with their learning. In some cases they specialise in areas such as literacy, numeracy, special educational needs, music, English as an additional language, and the creative arts. See low-functioning autism. A technique that detects linkage between DNA markers (landmarks in the DNA) and a condition or a trait. The technique is used to get an idea of what region of which chromosomes may be involved in the risk for a condition such as autism. Regional government bodies in the UK with responsibilities in areas such as education, health and social services. Studies involving repeated observations over an extended period of time. Longitudinal studies are often employed to follow the development of individuals over time. These studies contrast with cross-sectional studies, in which data are collected in each individual at one time point only. (See also cross-sectional studies.) A comprehensive behavioural intervention for children on the autism spectrum developed by Ivar Lovaas and colleagues. The technique employs reinforcement to modify children's behaviour through operant conditioning. The technique typically targets language development, social interaction and school integration skills. (See also behavioural interventions; comprehensive or integrated approaches; operant conditioning; reinforcement.) A term used by some specialists to describe cases of autism where the individuals' full-scale IQ score is below 0, i.e. in the disabled range. LFA is not a formal diagnostic category; the term is used in everyday situations, and in research. (See also high-functioning autism.) See mental age. See multi-agency assessment. Copyright 00 The Open University