Intellectual Disability and Autism Dr Tracey Lloyd

Transcription

1 Health and Wellbeing Lecture Series Intellectual Disability and Autism Dr Tracey Lloyd

2 Tonight s lecture Definitions of Intellectual Disability (ID) Measuring Intellectual Disability ID as a social construct Labelling intellectual disability Definitions of autism Features of autism Quality of Life issues

3 Definitions of ID ICD -10 WHO. A condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the developmental period, skills which contribute to the overall level of intelligence, i.e. cognitive, language, motor, and social abilities. Retardation can occur with or without any other mental or physical condition. DSM 5 Classification tool designed to facilitate reliable diagnosis and to collect public health statistics DSM 5 IDD (Intellectual Developmental Disorder) is a neurodevelopmental disorder

4 Definitions of ID Defined by American Association on Intellectual and Developmental Disabilities significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18. (AAIDD, 2014)

5 Assumptions of the AAIDD definition of ID Limitations in present functioning must be considered within the context of community environments typical of the individual s age peer and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve.

6 Definitions of ID ID based on a 3 part medical model that highlights : Significant limitations in intellectual functioning Significant limitations in adaptive behavior Emerges sometime in the development period NB ID and autism have different definitions Autism defined as a pervasive developmental disorder or as social (pragmatic communication disorder)

7 Significant limitations in intellectual functioning Limited intellectual functioning = IQ of 2 SDs below the mean. Mean for IQ = 100, SD = 15, < 70 = ID Severity of ID described as: Mild IQ Moderate IQ Severe IQ Profound IQ < 20

8 Measuring Intellectual Functioning Several measures of IQ e.g. Weschler Adult Intelligence Scale For adults aged years 10 subtests 4 domains Verbal comprehension Perceptual reasoning Working memory Processing speed

9 Significant limitations in adaptive behaviour Adaptive behaviours are day to day living skills Measured in terms of skills needed to function in society According to AAIDD in 2002 the adaptive behavior cut off is: Performance that is at least 2 SDs below the mean of either (a) one of the following three types of adaptive behavior: conceptual, social or practical, or (b) an overall score on a standardized measure of conceptual, social and practical skills.

10 Measuring adaptive behaviour The Vineland Adaptive Behaviour Scales Face to face or by phone with parent/guardian/ teacher/friend Semi structured interview format measuring 4 domains: Communication Socialisation Daily Living Skills Motor Skills (children under age 5)

11 ID as a social construct ID is a socially constructed definition Based on both measures of IQ and adaptive behaviour This means that the definition of ID has changed over time Currently, approximately 2-3% of people have a diagnosis of ID

12 ID as a social construct Historically people with ID have been labelled as: Cretin Trainable mentally retarded Imbecile Mental retardation Idiot Mental handicap Feebleminded Learning dif9iculties Mentally de9icient Learning disabilities Mentally subnormal Intellectual disability

13 ID as a social construct US proposed change to Federal Register (from MR to ID) Current preferred terminology takes a person first perspective ALWAYS refer to people with an intellectual disability or to person with autism

14 ID as a social construct Why use a label at all? To identify people who share common characteristics (diagnoses, so that the development, needs, and outcomes for those who share the characteristics can be researched and communicated To identify those who are eligible for services (specialist educational services, health services, social services) and support, or for whom policy and law are intended (including avoiding the death penalty) To provide a focus for campaigning organisations, or to facilitate identity

15 What is autism? Pervasive developmental disorder, severe and lifelong impairment in multiple areas of development (ICD-10, WHO) A lifelong neurodevelopmental disability, usually appears during the first three years 3 to 5 times more likely to affect boys than girls Prevalence rates of between 3.3 and 16 children per 10,000 or 1 in 100 adults Aetiology is unknown, though evidence of genetic component No socioeconomic or racial differences

16 Changes to diagnosis in the USA DSM-V was released in May 2013 It now uses two criteria to diagnose autism. Impairments in: Social communication and interaction Restricted, repetitive patterns of behaviour, interests or activities Removal of subgroups Autism on one continuum (Autism Spectrum Disorder, level 1-5)

17 What is autism? Characterised by a triad of impairments (Wing & Gould, 1979) Social impairments Communication impairments Restricted, repetitive behaviours/interests Flickr by SeRVe Photography at photos/ @n05/

18 Characteristics of autism Social impairments Impaired understanding of social relationships Failure to form attachments Lack of co-operative group play/pretend play Lack of turn-taking Avoidance of eye contact Lack of empathy Difficulty recognising others feelings tuning out the world

19 Characteristics of autism Communication impairments Little or odd language Echolalia Formal or stilted language Literal interpretations Pronoun reversal Odd use of sounds/words Conversational monologues

20 Characteristics of autism Restricted/repetitive interests Importance of routine/sameness Over-attachment to objects Specialist subjects Spinning of objects Other characteristics Tolerance to pain/cold/heat Inconsistent sensory responses Sleep disturbances Overactivity/underactivity

21 Savant skills

22 What autism is and is not This person does not have autism This person does have autism

23 ID and Autism Overview When you have met one person with ID or one person with autism, you have met one person with ID or one person with autism.

24 Quality of Life Both subjective and objective Same for all people, everywhere, yet individual Influenced by personal and environmental factors

25 Quality of life: model Physical well-being: Health, nutrition, fitness, mobility, personal safety Material well-being: Wealth/ownership, housing quality, transport Social well-being: interpersonal relationships with family & friends, community involvement: activities and acceptance Productive well-being: personal development, competence, choice/control, constructive activity Emotional well-being: happiness, contentment, mental health, freedom from stress, sexuality, religious belief, self-esteem Civic well-being: privacy, protection under law, voting Felce, 1997

26 Active Support (AS) A multi-element, person-focused model of caring for people with an ID who live in community homes Principles: be part of a community have good relationships with friends and family have relationships that last have opportunities to develop experience and learn new skills have choices and control over life be afforded status and respect be treated as an individual.

27 Main outcome of Active Support Engagement in meaningful daily activities Part of productive well-being of QoL Is largely determined by how able a person is Also affected by the level and type of support they receive from staff (irrespective of how able a resident may be) In AS, engagement usually evaluated through direct observation of residents in their homes

28 AS main components Activity and Support Plans Activity Protocols Participation Index Opportunity Plans Teaching Plans Individual Plans

29 Activity & Support Plan

30 Activity Protocol Setting the table Wipe the table with a damp cloth Place a table mat for each person plus three in the centre Place a fork to the left of each table mat Place a knife to the right of each table mat Place a dessert spoon at the head of each mat Place a glass on the left of the fork Place salt, pepper and sauces at the centre of the table

31 Participation Index

32 New Active Support Manual, wales/999095/en/active +support.html

33 With thanks to Dr Vasiliki Totsika for her input on the Quality of Life section of this presentation.