Autism Spectrum Conditions Dr Ian Ensum Consultant Psychologist

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

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

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

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

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

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)

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

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

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…

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

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

What to look for • Presence of qualitative, pervasive deficits across 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

Social Interaction • 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 Communication • Difficulties in using and understanding nonverbal 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

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?

“Social imagination” • 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

Understanding autism biology/genetic theory of mind cognition central coherence executive functions behaviour social impairments communicative impairments repetitive behaviours

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

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

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

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

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!

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

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!

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

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

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

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

Bristol Autism Advice Service • Recently established initiative – aims to be a onestop 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

The End ian. ensum@nhs. net