ASD Student Version October 2024 PDF

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The University of Sheffield

Professor Judy Clegg

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Autism Spectrum Disorder speech and language communication disability

Summary

This document contains lecture notes on Autism Spectrum Disorders and speech, language, and communication needs. It covers historical and current aspects of ASD diagnoses, and learning outcomes for students in a university context. Note mentions the usage of person-first language.

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Speech, Language and Communication Needs in the Context of Autism Spectrum Disorders/Conditions (ASD) HCS 2023/6304 Developmental Disorders of Communication Professor Judy Clegg School of AHPN&M University of Sheffield 1 Important note...

Speech, Language and Communication Needs in the Context of Autism Spectrum Disorders/Conditions (ASD) HCS 2023/6304 Developmental Disorders of Communication Professor Judy Clegg School of AHPN&M University of Sheffield 1 Important note (1) There is very wide variation in ASD and lots of perspectives about ASD. This lecture will focus on ASD with other needs impacting on speech, language and communication. We will also refer to the triad of impairment as a framework to understand ASD to help us understand historically how speech, language and communication difficulties fit into ASD. Some of you may be very experienced around ASD and others may have no experience. This session is pitched to meet the needs of all students. In this session, we will cover the history of Autism and ASD. This will help us to understand how ASD is understood and identified today. 2 Learning Outcomes By the end of this session, students should be able to: Show understanding of ASD as a pervasive developmental disorder Identify the developmental profile used to identify/diagnose ASD in children Demonstrate an awareness of the variation in ASD using the autism spectrum Understand how speech, language and communication difficulties can present in ASD Have knowledge of developmental diagnoses/disorders related to ASD and current debates around these diagnoses including neurodiversity 3 First of all…. Let’s share What do you know about ASD? What do you know about speech, language and communication in ASD? 4 Autism Spectrum Disorders (ASD) Watch ‘My Autism and me’ presented by Rose, 13 years of age (first 10 minutes). This was from CBBC Newsround. https://www.youtube.com/watch?v=ejpWWP1HNGQ As you watch this, consider: Communication Variation Pervasiveness/severity Impact on life Note: an older video that gives very good examples of the breadth of presentation in Autism as well as the variation in communication ability 5 Important note (2) Terminology is always evolving and therefore changing Person first language: person is before the disability/condition e.g., child with autism or child with an autism spectrum disorder (ASD) Identify first language: person’s condition or disability before the person, e.g., ‘autistic child’ or ‘I am autistic’ rather than ‘I have autism’. Ableist language: deficits, impairments, difficulties used to define the person, e.g., high/low severe autism vs using a strengths based approach to identify the strengths of the individual and where support may be needed, e.g., Leo has no verbal language and has limited communication vs Leo can use gestures to communicate. Leo can be supported by using lots of visual support with him, e.g., Makaton signs, visual information such as visual timetables. 6 A note on language Keating et al. (2022) - Explored the linguistic preferences of 654 English-speaking autistic adults across the globe. - The most popular terms were ‘Autism’, ‘Autistic person’, ‘Is autistic’, ‘Neurological/Brain Difference’, ‘Differences’, ‘Challenges’, ‘Difficulties’, ‘Neurotypical people’, and ‘Neurotypicals’ - No universally accepted way to talk about autism → respect personal preferences Slide courtesy of Hattie Powis, School of AHPN&M 7 Diagnostic criteria - Focuses heavily on ‘impairment’ (medical model) - Has faced criticism for pathologizing neurodivergent characteristics - There is call for more focus on differences rather than difficulties or deficits (neurodiversity paradigm) - DSM-5 (American Psychiatric Association, 2013) most commonly used in UK diagnostic services (but also ICD-11 - World Health Organization, 2019) Slide courtesy of Hattie Powis, School of AHPN&M 8 Diagnostic criteria - DSM-5 A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (all 3 subcategories must be present): 1. Deficits in social-emotional reciprocity 2. Deficits in nonverbal communicative behaviors used for social interaction 3. Deficits in developing, maintaining, and understanding relationships Slide courtesy of Hattie Powis, School of AHPN&M 9 Diagnostic criteria - DSM-5 B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history: 1. Stereotyped or repetitive motor movements, use of objects, or speech 2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior 3. Highly restricted, fixated interests that are abnormal in intensity or focus 4. Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment Slide courtesy of Hattie Powis, School of AHPN&M 10 Diagnostic criteria - DSM-5 C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life). D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level. Slide courtesy of Hattie Powis, School of AHPN&M 11 Autism Spectrum Disorders (ASD) Watch some video material of a child who is 4 years old He has a diagnosis of ASD. Why? The video is about 7 minutes long in total – there are three clips to watch. The camera is aimed to try and capture video footage from the child. The video shows the child as well as the SLT talking to Mum. Make some notes as you watch the video. 12 Variation in Autism – some history ‘Autism’ as a diagnostic concept was developed by Leo Kanner in the 1940s Whilst he identified many of the behaviours we are thinking about today, he did not discuss these in terms of variation Therefore, autism was understood to be a single entity – a behavioural syndrome Much change in the diagnosis since this time (1940s) Autism continuum of severity and triad of impairment (communication, socialisation and imagination) came from Lorna Wing, Judith Gould and colleagues (1970s and 1980s) and was used to try and explain the variation in Autism. We will come back to this. 13 Let’s compare – diagnostic criteria DSM-III diagnostic criteria in the 1980s included: ‘Pervasive lack of responsiveness to other people; Gross deficits in language development’ Absence of delusions, hallucinations’ Intellectual disability common (75%) Many children minimally verbal Most children in special educational provision Specialist diagnostic services (Happe 2018) 14 Let’s compare – diagnostic criteria DSM -5 diagnostic criteria now includes: Persistent deficits in social communication and social interaction across multiple contexts’ ‘Restricted, repetitive patterns of behaviour, interests or activities’ can include ‘hyper or hypo-reactivity to sensory input’ Currently or by history multiple diagnoses allowed for the first time, e.g., ASD and Attention Deficit Hyperactivity Disorder (ADHD) Intellectual disability minority (25%) Mainly mainstream schools (Happe 2018) 15 Let’s compare-prevalence 1980s Autism = 6 in 10,000 Male to female 5/10:1 Under diagnosis 2018 ASD = 1 in 100 Male to female 3:1 ?over diagnosis (Happe 2018) 16 Recent research – incidence of Autism Russell et al., (2021) Population based study: primary care data base of 6-9 million individuals between 1998 and 2018 aged 0 years and upwards Incidence of Autism defined as percentage (%) of children, adolescents, and adults with a new record of an autism diagnosis in each year (1998–2018) From 1998 to 2018, a 787% increase in recorded incidence of ASD Increase greater in 1) females than males and 2) adults than children Therefore, increase most likely due to increased reporting, application of diagnosis, particularly to ‘higher functioning’ adults. This means that ASD is not increasing but ASD is now much more widely recognised and identified across all the population, i.e., not children with associated severe learning disability. 17 Myth busting - the Autism ‘Spectrum’ Accessed from https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/ 18 19 Accessed from https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/ Accessed from https://the-art- of-autism.com/understanding- the-spectrum-a-comic-strip- explanation/ 20 Accessed from https://the-art-of- autism.com/understa nding-the-spectrum- a-comic-strip- 21 explanation/ Accessed from https://the-art-of- autism.com/understa nding-the-spectrum- 22 a-comic-strip- - Autistic advocates have highlighted the importance of acknowledging that ‘functioning’ is transient, varying with time and place (Kapp, 2020) - The individual's unique profile must be understood to specify meaningful supports. 23 Slide courtesy of Hattie Powis, School of AHPN&M Triad of Impairment in ASD (Lorna Wing 1988) Triad of Impairment in ASD (Lorna Wing 1988) This is old so why are we looking at this? Speech, language and communication difficulties used to be a core diagnostic developmental behaviour in the diagnosis of ASD. This was due to the use of the Triad of Impairment in making a diagnosis. Part of the triad focused specifically on speech, language and communication development and abilities. As Speech and Language Therapists, it is helpful for us to know about this. Speech and Language Therapists often work with children with ASD where their speech, language and communication abilities are minimal, e.g., non-speaking/non-verbal/minimally verbal and/or communication is a significant area of need for the child. 24 Triad of Impairment in ASD (Lorna Wing 1988) 1. SOCIALISATION – Impaired, deviant & extremely delayed social development 2. COMMUNICATION – Impaired & deviant language and communication 3. IMAGINATION – Rigidity of thought & behaviour & poor imagination abilities, e.g., in play skills Note: we have moved away from the triad but at this point it is useful to understand the triad to understand where speech, language and communication fitted in to ASD Note: the language used in these descriptions by Lorna Wing and Judith Gould (1979). Reflect on how language has changed. 25 Socialisation (1) Lack of ability to understand and interpret social signals and behaviours Difficulty initiating social contact and forming relationships with others Wing and Gould (1979) Some people with autism are ‘socially passive’ Some are actively social but in a unusual way Some appear disinterested in other people entirely Some are interested in people, but in a stilted and over-formal manner (added by Wing, 1996) A lack of reciprocal interest in others Can result in social withdrawal, isolation or alienation Note: the language used in these descriptions by Lorna Wing and Judith Gould (1979). Reflect on how language has changed. 26 Socialisation (2) The following behaviours were used as evidence of ‘impaired socialisation’: Unusual eye gaze Atypical body posture/problems with proxemics Absent or deviant use of gesture Unusual facial expressions Note: the language used in these descriptions by Lorna Wing and Judith Gould (1979). Reflect on how language has changed. What language do we/should we use now? 27 Communication (1) Difficulties using language to communicate 🞂Some people with ASD do not use spoken language at all to communicate, e.g., non verbal or minimally verbal 🞂Others might use language but in a way that is not effective, e.g., communication is still a challenge and impacts on learning 🞂Others may be very competent communicators who experience more difficulties or differences in other aspects of the spectrum, e.g., sensory processing 28 Communication (2) Some individuals with ASD use language in different ways. This was considered part of the early diagnosis of ASD Echolalia and implications for Gestalt Language Processing (GLP) Perseveration Stereotyped and idiosyncratic language Neologism/jargon Pronoun reversal Often have unusual pitch, rhythm, intonation and stress Many have additional language difficulties – syntax, vocabulary, word finding, etc… 29 Communication (3) Inferential use of language as an area of significant need: Deictic words – “here”, “there”, pronouns, “this”, “that”… Time words – “before”, “after”, “while”, “later”… Humour/sarcasm/irony Metaphor and simile Narrative – lack of coherence For example: ‘The clock is at the wall’ Instead of ‘The clock is on the wall’ For example: ‘Turn the test paper over. You’ve got 20 minutes’ 30 Imagination (1) (thought and behaviour) Young children with ASD often appear to have delayed pretend play and symbolic play Older individuals may play or behave imaginatively but in an unusual or routinised way – ‘scripted’ Often have stereotyped or repetitive behaviours, which can be simple (sensori-motoric) or complex (obsessive-compulsive) including what is often referred to as ‘stimming’ Often focus on details and the sensory properties of people/objects More able individuals may show perceived ‘obsessive’ interests or factual knowledge 31 Imagination (2) Some examples: Thomas the Tank Engine Trams Doctor Who Log flumes Smoke alarms Door hinges Whether lions or tigers are the biggest cat Keith Chegwin’s thumb 32 ASD as a spectrum 🞂ASD as a spectrum and not a single or discrete entity 🞂Huge heterogeneity 🞂ASD with many different profiles 🞂ASD with learning disability; ASD with Developmental Language Disorder (DLD; ASD with a mental health difficulty; ASD with dyslexia) 🞂It can be that the learning disability, the DLD, the mental health difficulty and so on is more challenging than the ASD 33 - Autistic advocates have highlighted the importance of acknowledging that ‘functioning’ is transient, varying with time and place (Kapp, 2020) - The individual's unique profile must be understood to specify meaningful supports. 34 What is it like to be Autistic Let’s try and put this in some context Watch the video and get a sense of the sorts of experiences Autistic children can have Example of difficulties/differences in sensory processing, Alex 11 years old Link to video here https://www.autism.org.uk/what-we-do/campaign/public- understanding/too-much-information Check out the other videos as well if you’re interested 35 Conditions related to the autism spectrum There are many conditions historically that have been proposed as being related to, or separate from, autism – or alternatively, part of the spectrum Some of these were formally recognised in diagnostic criteria Asperger syndrome High Functioning Autism Pervasive developmental disorder not otherwise specified (PDD-NOS) We will now look at Asperger syndrome 36 Asperger syndrome – some history Around the same time that Kanner proposed the diagnosis of autism, Vienna-based psychiatrist Hans Asperger (1944) wrote of children presenting with an ‘autistic psychopathy’ These children: Presented with restricted and repetitive interests Used language in unusual, overly formal ways Appeared clumsy – both socially and physically Were intellectually able However, Asperger’s work was not well known until Wing (1981) revisited his work when proposing the autism continuum 37 Asperger syndrome 2 Referred to children who demonstrate deficits in social interaction, social use of language and restricted/repetitive interests (namely obsessions)… … but without language delay or disorder, or impaired intellectual ability Some fuzziness/controversy over whether Asperger syndrome was the same as ‘high-functioning autism’ Much controversy over whether Asperger Syndrome was a disorder or a difference - some researchers argued a very high prevalence of the condition (up to 1 in 50 males!) Asperger syndrome no longer diagnosed/formally recognised in DSM-V 38 Asperger syndrome 3 Watch the video material of a man with who was diagnosed with Asperger Syndrome. The clip is from the National Autistic Society and is available on blackboard in the Week 5 ASD folder. How does he show a profile of Asperger syndrome? 39 DSM -5 diagnostic criteria now includes: Persistent deficits in social communication and social interaction across multiple contexts’ ‘Restricted, repetitive patterns of behaviour, interests or activities’ can include ‘hyper or hypo-reactivity to sensory input’ Currently or by history multiple diagnoses allowed for the first time, e.g., ASD and Attention Deficit Hyperactivity Disorder (ADHD) Asperger Syndrome, High Functioning Autism now included in the DSM-5 diagnostic criteria as ASD and are no longer separate diagnoses. 40 Neuro-developmental /disorders conditions A medical term Child disability Located in impairment based/medical approaches Broadly defined as ‘Neurodevelopmental disorders result when complex genetic and environmental factors come together to change brain development. In some cases, we know what those genetic and environmental factors are. In many cases, we do not. Neurodevelopmental disorders tend to run in families. The father might have a learning disability and his son might have ADHD. A brother might have DLD and his sister might have autism. This suggests that some neurodevelopmental disorders have common causes. No one has identified the exact causes of the brain dysfunctions that lead to neurodevelopmental disorders, although researchers are working on this question. Of course, everyone’s brain is different from everyone else’s brain.’ Include: Autism Spectrum Disorders (ASD), Attention Deficit Hyperactivity Disorder (ADHD), learning disability/intellectual disability, Developmental Language Disorder (DLD) motor co-ordination disorder and more HCS 2023/6304 41 Neurodiversity: a note The term was coined by Judy Springer in 1999, as part of her thesis. It was published in the article ‘Why can’t you be normal for once in your life?’ in the book Disability Discourse (Corker, M., and French, S. (Eds). (1999). Disability Discourse. Open University Press). Located in the social model of disability; asset rather than deficit approach; identify person’s strengths Often centred around ASD, ADHD, Dyslexia and Dyspraxia Neurodiversity is used to refer to a group of people with different ‘brain types’. One person can’t be neurodiverse: they are ‘neurotypical’ (their neurological profile fits into the ‘typical’ model) or ‘neurodivergent’ (their neurological profile diverges from the ‘typical’ profile). Neurotypicals and neurodivergents together are neurodiverse. However, in practice, when someone refers to ‘neurodiversity’ they are USUALLY talking about ‘non-neurotypical’ 42 ASD: in summary Still considered a neuro developmental disorder Diagnosed according to DSM-5 diagnostic criteria Usually diagnosed before 5 years of age, can be later Triad of Impairment – socialisation, communication, imagination (thought and behaviour) Dyad of Impairment in DSM-V– more recent (2018) Spectrum - accounts for variation across individuals Some very confusing diagnostic issues ASD and learning difficulties; ASD and Developmental Language Disorder (DLD) Speech and language Therapists often work with children who are non- speaking/ non-verbal, minimally verbal and/or where communication is a significant area of need for the child 43 Recommended reading – all available electronically Co-occurrence between Language Disorders and Common Conditions in Childhood. This is chapter 5 in Law et al.,(2022) Language Development: individual differences in a social context , Cambridge University Press Note on the above reading: this is a good overview chapter Rey JM (editor). IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva. International Association for Child and Adolescent Psychiatry and Allied Professions 2012. Note on the above reading: Although this is an older text, it gives a very good and indepth historical understanding of ASD. Other reading: Russell, G., Stapley, S., et al., (2021). Time trends in autism diagnosis over 20 years in a UK population based cohort. Journal of Child Psychology & Psychiatry, online publication. This paper is in the week 5 blackboard folder. Note on the above reading: this gives a really good understanding as to why there is an increase in the diagnosis of ASD at a population level Brignell, A., Morgan, A. T., Woolfenden, S., Klopper, F., May, T., Sarkozy, V., & Williams, K. (2018). A systematic review and meta-analysis of the prognosis of language outcomes for individuals with autism spectrum disorder. Autism & Developmental Language Impairments, 3. https://doi.org/10.1177/2396941518767610 Note on the above reading: this is a complex paper but very good about understanding speech, language and communication over time/through development 44 Please also see 🞂A very informative lecture on You Tube by Professor Francesca Happe, Institute of Psychiatry, Kings College London, UK. This is a keynote talk Professor Happe delivered at the Discover Conference in 2018. https://www.youtube.com/watch?v=39rCDFmZcjI This is in the week 3 folder 🞂National Autistic Society (NAS) https://www.autism.org.uk/ 45 Some Key Historical References Asperger, H., 1944, Die ‘autistischen pyschopathen’ im Kindesalter. Archiv fur Psychiatrie und Nervenkrankheiten, 117, 76-136. Frith, U., 1989, Autism: Explaining the Enigma (Oxford: Blackwell). Gillberg, C., 2003, Deficits in attention, motor control and perception: a brief review. Archives of Disease in Childhood, 88, 904-910. Happé, F.G.E., Ronald, A. and Plomin, R., 2006, Time to give up on a single explanation for autism. Nature Neuroscience, 9, 1218-1220. Newson, E., Le Marechal, K. and David, C., 2003, Pathological demand avoidance syndrome: a necessary Wing, L., 1981, Asperger’s syndrome: a clinical account. Psychological Medicine, 11, 115-129. Wing, L., 1988, The continuum of autistic characteristics. In E. Schopler and G.B. Mesibov (eds), Diagnosis and Assessment in Autism (New York: Plenum). Wing, L., 1996, Autistic spectrum disorders. British Medical Journal, 312, 327-328. Wing, L. and Gould, J., 1979, Severe impairments of social interaction and associated abnormalities in children: epistemology and classification. Journal of Autism and Developmental Disorders, 9, 11-29. 46

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