How good is your diagnosis Tom Berney Peter Carpenter
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Outline • NICE Quality Standards – how do we apply • What is reasonable diagnosis – The ADOS
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Population survey - Brugha
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Nice CG142 • Said relatively little on ID – ‘its sorted – we have the teams there already’ • Role of LDS team to diagnose Autism • Why does Psychiatrist need to see? Co-morbidity – need history of presentations These slides are the intellectual property of Dr Paschos and must not be reproduced
NICE Quality Standard QS51 Autism • Statement 1: Diagnostic assessment by an autism team • People with possible autism who are referred to an autism team for a diagnostic assessment have the diagnostic assessment started within 3 months of their referral. – The team conducting the assessment for children, young people or adults should be a specialist integrated autism team with age-appropriate expertise, and should be part of the local autism diagnostic pathway (as required by the Autism Act 2009) These slides are the intellectual property of Dr Paschos and must not be reproduced
NICE QS51 Autism: Statement 1 cont A local adult autism team should include: • • • • • • • •
clinical psychologists primary care services Nurses occupational therapists Psychiatrists social workers speech and language therapists support staff (for example, to support access to housing, educational and employment services, financial advice, and personal and community safety skills).
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NICE QS51 Autism: Statement 1 cont For Adults: • •
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During a comprehensive diagnostic assessment, enquire about and assess: core autism signs and symptoms (difficulties in social interaction and communication, stereotypic behaviour, resistance to change or restricted interests, and also strengths) that were present in childhood and have continued into adulthood early developmental history, if possible behavioural problems functioning at home and in the community (for example, in education or in employment) past and current physical and mental health problems other neurodevelopmental conditions hyper- and hypo-sensory sensitivities. Carry out direct observation of core autism signs and symptoms, especially in social situations. Include observation of risk behaviours and safeguarding issues.
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NICE CG142 Clinical Audit Tool • Echoes requirements above • Informant involved • At the beginning of a comprehensive assessment the purpose of the assessment and how the outcome will be fed back should be discussed with the person • Biological test not routinely used for diagnosis • Risks assessed • Care plan developed from assessment These slides are the intellectual property of Dr Paschos and must not be reproduced
NICE QS51 Autism: Statement 2 • People having a diagnostic assessment for autism are also assessed for coexisting physical health conditions and mental health problems. – Evidence of local arrangements to ensure that people having a diagnostic assessment for autism are also assessed for coexisting physical health conditions and mental health problems. – Note that if an autism team does not have the relevant expertise to conduct these assessments, the child, young person or adult should be referred to services that can conduct the assessment. These slides are the intellectual property of Dr Paschos and must not be reproduced
NICE QS51 Autism: Statement 3 • People with autism have a personalised plan that is developed and implemented in a partnership between them and their family and carers (if appropriate) and the autism team. – Evidence of local arrangements to ensure that people with autism have a personalised plan that is developed and implemented in a partnership between them and their family and carers (if appropriate) and the autism team. These slides are the intellectual property of Dr Paschos and must not be reproduced
NICE QS51 Autism: Statement 3 cont The plan should cover: • any post-diagnostic support that the person and their family and carers need • what interventions, support and timescales are most appropriate for the person; these include clinical interventions and social support, such as support in relation to education, employment or housing • preventative action to address triggers that may provoke behaviour that challenges • any further interventions for identified coexisting conditions. The plan should also include a risk management plan for people with behaviour that challenges or complex needs. For young people under 18 years the plan should also include managing the transition from child to adult services.
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NICE QS51 Autism: Statement 4 • People with autism are offered a named key worker to coordinate the care and support detailed in their personalised plan. – Evidence of local arrangements for people with autism to be offered a named key worker to coordinate the care and support detailed in their personalised plan – Adults receiving care from the autism team should have a named key worker. For adults not receiving care from the autism team, mental health or learning disability services, the key worker could be a member of the primary healthcare team. These slides are the intellectual property of Dr Paschos and must not be reproduced
NICE QS51 Autism: Statement 5 People with autism have a documented discussion with a member of the autism team about opportunities to take part in age-appropriate psychosocial interventions to help address the core features of autism. – The most appropriate psychosocial interventions for adults with autism should be identified based on the person's specific needs. The decision-making process should be based on recommendations 1.3.1–5 in NICE clinical guideline 142. Recommendations 1.4.1–12 in NICE clinical guideline 142 describe the different types of psychosocial interventions and how they should be delivered.
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NICE QS51 Autism: Statement 6 • People with autism are not prescribed medication to address the core features of autism.
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NICE QS51 Autism: Statement 7 • People with autism who develop behaviour that challenges are assessed for possible triggers, including physical health conditions, mental health problems and environmental factors. – Before starting other interventions for behaviour that challenges, assess for any factors that may trigger or maintain the behaviour, including: – physical disorders – the social environment (including relationships with family members, partners, carers and friends) – the physical environment, including sensory factors – coexisting mental disorders (including depression, anxiety disorders and psychosis) – communication problems – changes to routines or personal circumstances.
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NICE QS51 Autism: Statement 8 • People with autism and behaviour that challenges are not offered antipsychotic medication for the behaviour unless it is being considered because psychosocial or other interventions are insufficient or cannot be delivered because of the severity of the behaviour.
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What do you do with barn door • Does one need the full comprehensive assessment to make a diagnosis • Diagnosis vs Comprehensive Assessment.
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Pathway •
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Most are existing patients where a clinician questions if have Autism Transitions – NEED to have: – Diagnostic assessments made – Past interventions including medication. – New service need assessment
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Few are new referrals - if so have eligibility assessment which should raise issue. These slides are the intellectual property of Dr Paschos and must not be reproduced
Issues with Diagnosis • Profound – mainly on social awareness and RRBI • Severe – communication becomes component • Are we diagnosing for Research or for clinical – Research ADI(R) and ADOS – Clinical – evidence looked for appropriate information These slides are the intellectual property of Dr Paschos and must not be reproduced
Issues – the confounders • He is doing it as he has learning difficulty.
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Issues – the confounders • He is doing it as he has learning difficulty. • ‘Active but odd’ seen as sociable [and not autistic] as approach people [to see what they are bringing] • He is like that as he has attachment disorder /instutionalised. – Heather Moran: Clinical observations of the differences between children on the autism spectrum and those with attachment problems: the Coventry Grid Good Autism Practice Oct 2010 11(2) 46-59 http://www.aettraininghubs.org.uk/wpcontent/uploads/2012/05/5.4-Moran-paper-attachment.pdf These slides are the intellectual property of Dr Paschos and must not be reproduced
Screening •
Do we need? - or do we need a clinical statement as to why feel the person may have autism
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Screening for more general psychiatric issues, including autism • Mini PASS-ADD – Pavilion Publ (£180 +£3/form) • DASH-II [Diagnostic Assessment for the Severely Handicapped] 84 item [American $325 for handbook & 50 forms, then $4/form]
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Autism Behaviour Checklist On the web - free - see http://www.qsti.org/ABC_checklist.pdf all abilities and ages - mean age of those tested 20. 57 questions - 5 subscales - Sensory, relating, body and object use; language; social and self help. Questions weighted. cut off 53. Some comparisons since then and evaluations - may be able to decide on smaller set of questions. But generally good discrimination (not in NICE as not done against ICD10) Krug D A et al ‘Behavior Checklist for Identifying Severely handicapped Individuals with high levels of autistic behavior’ J Child Psychol Psychiat 1980 (21) 221-9 These slides are the intellectual property of Dr Paschos and must not be reproduced
PDD-MRS By Kraijer - manual and forms from Hogrefe.nl (90€ for 75 forms) tested to age 55 Response to contact initiative of Adults - range of social interaction (2 - 3) Loner amongst peers (3) Language deviance in production (2) Language absent (1) Language deviant in content (1) unusual handling of objects (2) stereotyped manipulation of own body (2) strong dependence on fixed patterns, rituals (2) Self Injurious behaviour (1) highly erratic unpredictable behaviour (1) unusual unreasonable excessive anxiety (1) outstanding and obsessive interests (1) These slides are the intellectual property of Dr Paschos and must not be reproduced
Tools for Diagnosis • Who uses tools Interview – DISCO – [abbreviated DISCO] – ADI(R) Observation – CARS2 – ADOS
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Core ID assessment? Family family relationships Family medical and psychiatric history Medical Known syndromes /physical Allergies Past medical history Developmental History Motor milestones Social / Communicative Milestones
Current skills Eating, swallowing and elimination Mobility Sleep Sensory issues Communication Interaction RRBI and other interests, Neuro-Psychiatric ADHD Epilepsy Psychiatric illness Capacity and Risks Choice making and consent likes and dislikes Current risks
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History Use ADI(R) or DISCO style questions • • •
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Social Looking Social Greeting behaviour Facial expression and body language Peer relationships - group interaction and play Empathy for others Sharing enjoyment reaction to others emotions Discrimination strangers/ familiars
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Getting attention Use of gesture to communicate Reciprocal interchange Stereotyped speech Social imitative and imaginative play Preoccupation Non-functional routines Stereotypies Unusual Sensory responsiveness
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Observation • PDD-MRS • CARS2 • ADOS-2
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Childhood Autism Rating Scale CARS2 •
Standard (ST) for IQ<80 any age •
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HF for more able.
Observation of play and interaction (or interview) 15 domains – each Scored 1- 4 against behaviour of normal person of that age. Form sets out exemplar for each score Score – gives percentile compared to others with ASD – But is it needed – structure or algorithm? Pearson - £37 for 25 forms. These slides are the intellectual property of Dr Paschos and must not be reproduced
CARS2-ST • • • • • • • •
• Relating to people Imitation Emotional response • • Body Use • Object use Adaptations to change • Visual response • Listening Response
Taste, Smell Touch response and use Fear or nervousness Verbal Communication Non-verbal Communication Activity Level Level & Consistency of Intellectual response • General Impression
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ADOS-2 • Module to use based on language level not age – Module 1 usually appropriate for profound or severe – ?adapt for age appropriate? • Carers worry, the subjects just enjoy it.
• Cost – [Pearson – kit £1800; £500 training kit, £5 per form] These slides are the intellectual property of Dr Paschos and must not be reproduced
ADOS-2 Module 1 probes • Free play –various toys likely to interest • Response to name and joint-attention [when playing and in Bubble Play] • Anticipation routine with objects [balloons, jack-in-the-box]
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ADOS-2 Module 1 probes • Free play –various toys likely to interest • Response to name and joint-attention [when playing and in Bubble Play] • Anticipation routine with objects [balloons, jackin-the-box] • Anticipation social routine [Peekaboo with blanket] • Functional, symbolic imitation [copying examiner’s actions using toy items and items imagined to be others] [Birthday party] These slides are the intellectual property of Dr Paschos and must not be reproduced
ADOS-2 Module 1 probes • Free play –various toys likely to interest • Response to name and joint-attention [when playing and in Bubble Play] • Anticipation routine with objects [balloons, jack-in-thebox] • Anticipation social routine [Peekaboo with blanket] • Functional, symbolic imitation [copying examiner’s actions using toy items and items imagined to be others] [Birthday party] • Snack – needing requesting. These slides are the intellectual property of Dr Paschos and must not be reproduced
Observation probes Play Engagement Balls - playing on floor or table Wind up toys or racer cars etc Bubbles, spinning tops, Balloons ‘Drawing’ together Looking at picture or book together Asking what is their particular interest and interacting over it.
Dolls/ lego men/ dolls house – for acting out social situations – birthday party – pretend play Toy items to imitate use of items Food? Boxes that need help to open. reaction to touch or tickle (or physical game) [or you tickling other person] having a snack and drink – drumming on the table.
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Structured collation Observation Interaction Desire for interaction showing sharing enjoyment Tools of Interaction Eye contact Facial expression to person and/ or appropriate to events Use of Gesture Use of intonation etc Competence of interaction pointing out for attention Quality of interaction Feeling of rapport These slides are the intellectual property of Dr Paschos and must not be reproduced
Structured collation Observation Communication •Using sounds or words to interact
•Echolalia (esp delayed) •Odd use language - eg neologisms, pronoun reversal •Telling you things,
•Asking things •reciprocity of conversation •How creative
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Structured collation Observation RRBI •stereotypies •Unusual interests /sensory interests •sensory issues •Self injury •Anxiety
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Assessing IQ? • Vineland – gives ability levels [interviewer completes] – [Pearson - £140 starter, £3 per form]
More able and interactive: • Ravens Matrices • British Picture Vocabulary Scale. • Kaufman Brief Intelligence Test (KBIT-2) These slides are the intellectual property of Dr Paschos and must not be reproduced
What do we think is a reasonable diagnosis? Structural Components • Multidisciplinary • Informant history • Observations • Physical examination? – Explore aetiology
• Co-morbidity? These slides are the intellectual property of Dr Paschos and must not be reproduced
What else do you assess for? • • • • • • •
Sensory integration disorders Physical disorders Genetic screen Tourette ADHD Anxiety disorders – phobia OCD Mood disorders Who does it? Psychiatrist, psychologist, GP?
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