Autism Spectrum Conditions

1. Autism Spectrum Conditions Dr Ian Ensum Consultant Psychologist Bristol Autism Spectrum Service

2. Overview Definition Epidemiology Autism & social exclusion Recognising autism in clinic Diagnostic features How to work better with people with autism Bristol Autism Spectrum Service

3. Definition • Asperger syndrome is a pervasive developmental disorder - lifelong condition • It is an autism spectrum condition – essentially describes ‘high functioning’ end of autism spectrum i.e. people with all the social impairments of autism, but with normal/high IQ • Characterised by problems around social interaction/communication & repetitive, routinised activity

4. Fun facts Overall prevalence of 1% for ASC (Brugha et al, 2009) 1.8% men & 0.2% women meet diagnostic criteria Just under half would be considered to have Asperger syndrome Historically, many adults with AS are undiagnosed Lack of local prevalence data Difficult for commissioners to plan service Adults with autism are amongst the most socially excluded people in the UK

5. The social exclusion of adults with ASC “Doubly excluded” Health services Fall between MH/LD Competency gap amongst frontline staff Social care services Employment Income Housing Significant psychiatric comorbidity

6. Policy Context Autism Act (2009) National Autism Strategy - Fulfilling and Rewarding Lives (DH, 2010) – updated 2014 (Think Autism) Statutory Guidance - Implementing Fulfilling and Rewarding Lives (DH, 2010) - updated 2015 National Audit Office - Supporting people with autism through adulthood (NAO, 2009) NICE-Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE, 2012)

7. Recognising autism in clinic Typically, people with autism: • find social situations confusing & may avoid them • find it hard to make small talk • often come across as rude or socially naïve, have always had difficulty in making or maintaining friends • find it hard to intuitively work out what others are thinking and/or feeling

8. Recognising autism in clinic • have unusually strong, narrow interests • do certain things in a very inflexible, repetitive way • very good at picking up details and facts • frequently tend to turn conversation back to themselves or to their special interests • have a strong preference for order, and a dislike of change • slower processing speed for verbal communication – can appear not to understand

9. Recognising autism in clinic • Unusual non-verbal communication: • Odd eye contact, avoids or stares – not necessarily absent, just different in quality • Odd voice – lack of flow or rhythm, monotonous sppech, too loud, too quiet • Lack of use of gesture to emphasise what saying • Unusual mannerisms • Some people (particularly women with AS) have learnt non-verbal communication so difficulties can be masked, but…

10. Recognising autism in clinic • Motor abnormalities • Unusual gait • Motor stereotypies • Dyspraxia • Sensory abnormalities • Differences in the way the sensory systems (including: touch, hearing, sight, taste, smell, proprioceptive & vestibular) process information • May be hyper- or hypo- sensitive in any or all of these systems

11. Sensory differences • Hypersensitivities • Bright lights and high pitched sounds may be difficult to cope with. • Certain textures or clothing may be highly irritating • Certain smells or colours may cause stress. • Hyposensitivities • May not feel pain when hurt – injury goes unnoticed. • Feeling of full bladder or hunger pains may not register. • Changes in temperature may go unnoticed

12. What to look for • Presence of qualitative, pervasive deficitsacross the ‘triad of impairments’: • Social interaction • Social communication • Social imagination • In DSM-V this is expressed as difficulties in 2 areas: • Social interaction/communication • Repetitive/routinised behaviour

13. Lifelong difficulties in forming and maintaining reciprocal social relationships People with autism can have friendships – important to look at quality Typically needs-led, non-reciprocal, not maintained over time, or overly passive/dominant This can occur for many reasons – importance of establishing developmental trajectory No “onset” – problems more apparent around transitions/times of increased stress Social Interaction

14. Difficulties in using and understanding non-verbal behaviours such as eye-gaze and body language Difficulties in extracting meaning from context and reading between the lines Literal understanding – e.g. difficulty with metaphor/idioms Pedantic, long-winded speech – talking at people, rather than with them Social Communication

15. A different perspective • Literal interpretation is simply accuracy • Being pedantic is being linguistically honest • If we actually said what we mean (and meant what we said) then life would improve considerably Now who has the impairment?

16. Aka repetitive/routinised interests/behaviour Tendency towards inflexible, black/white thinking Strong preference for sameness Significant dependence on order, predictability and consistency Change can be highly problematic Narrow, intense “special interests” Difficulty with theory of mind “Social imagination”

17. biology/genetic cognition behaviour socialimpairments communicativeimpairments repetitivebehaviours Understanding autism central coherence theory of mind executive functions

18. Theory of Mind / Mentalising • Essentially, ‘putting yourself in someone else’s shoes’ or seeing things from another person’s point of view • Helps us work out what other people are thinking and feeling • For most individuals mentalising happens intuitively • People with autism can find this difficult

19. Difficulties with Theory of Mind could lead to: • Not being able to predict/anticipate other peoples’ behaviour • Not knowing when something may cause offence – remarkable honesty • Not knowing how to resolve problems and conflict with others • Struggling to ‘keep up’ in group situations - longer processing time for social information, due to using intelligence rather than intuition

20. Two other problems… • Weak central coherence • notice patterns/objects more than social info • strength and a weakness • Executive functioning deficits • difficulty planning/organising thinking &behaviour • inflexible and concrete in thinking – differences with problem-solving • difficulties ‘multi-tasking’ – better at focusing on one thing at a time, potential for ‘overload’ • impulsivity

21. Top tips Communication should be: • Free of assumptions • Direct and precise • Avoiding figurative speech – use plain English • Reinforced in writing if necessary– establish preferred method • Expressive language ability often superior to receptive so don’t assume understanding

22. Top tips • If there is a delay in response from the individual when asked a question, WAIT as it may be a processing difficulty and they probably will respond. • Ensure sessions are structured and be consistent in approach • Try not to be late or cancel appointments • Don’t be offended by honest comments • Be as predictable as possible and have no surprises!

23. Top tips • If someone is distressed or anxious, think creatively about whether this could be a sensory issue – it is not always obvious • The individual may not make the link between sensory stimulation and anxiety themselves • Due to the nature of hyper/hypo sensitivity, it may not seem obvious to us either – especially if we don’t have any hyper/hypo sensitivity ourselves • Social interaction is hard enough for people with autism, let alone in a difficult sensory environment

24. Things that might help • Daily schedules • Visual timetables • Jobs checklist • Calendars • Wall mounted monthly calendar • Daily/weekly planner • Timers/alarms • Visual organisers • Note taking – write it down!

25. Challenges • Working with people who have autism can challenge our preconceptions of how people should behave towards one another • The person may not have the awareness to understand your feelings or point of view • They may be unable to back down in an argument because they have no built-in desire to give in or please anyone • It may be difficult to reach a shared understanding about the meaning of events

26. Advantages • People with autism are without doubt some of the most amazing, incredible people in the world • If you get to work with someone with autism, you’re a very lucky individual • The only danger is, you won’t ever want to work with anyone else… …this is absolutely true by the way

27. Bristol Autism Spectrum Service Multi-disciplinary specialist autism team Set up 2006 – ‘properly’ commissioned 2009 Small budget – trying to meet very big need Attempts to provide a well thought-out, cheap, effective solution to gaps in service Used as good practice example in NICE

28. What does the team do? • Two broad areas of activity: • workforce support to frontline staff – training, awareness-raising, supervision, liaison to GPs, MH services, social workers, employment support etc • direct work with people with Asperger syndrome who wouldn’t otherwise be picked up by services • Diagnostic clinic • Post-diagnostic support • Advice service – preventative interventions

29. Bristol Autism Advice Service • Recently established initiative – aims to be a one-stop shop providing: • Signposting • Problem-solving/advice • Group interventions – currently anxiety management, mindfulness, problem-solving • Staffed by BASS & professionals from agencies across care pathway via secondments • Accessible by anyone with autism in Bristol • Aim is to increase social inclusion & keep people away from MH/social care services

30. The End ian.ensum@nhs.net