Andrew Carpenter London Brokerage Network First Reactions

What do you think you know about autism?

What experience do you have?

What words or phrases come into your mind when thinking about autism? A little bit of history - First identified by Leo Kanner (1943) & (1944) - 1960’s – First person in UK diagnosed with autism - Lorna Wing and Judith Gould (1979) – Triad of Impairments - Asperger’s Syndrome (1980’s) - Ongoing research, leading to new & increased understanding – DSM 5, etc. Terminology

What do the following stand for in terms of autism?

ASC – ASD – AS – HFA – PDA – PDDNOS

What terms should we use? A person with autism? An autistic person? Someone who has autism? True or False?

• Autism is classed as a type of learning disability • Autism is caused by the MMR vaccine • The majority of people with ASC find socialising very important • Women cannot be autistic • Autism is a ‘spiky’ condition, affecting people differently at different times • All autistic people have remarkable ‘special skills’ • Autistic people are emotionally ‘cold’ Terminology (2)

High and Low Functioning Mild and Severe What does that mean to you, when you hear those terms? What criteria are you using to make those judgements?

“I’m a little bit autistic” / “Everyone’s somewhere on the spectrum” ??? Triad of impairments However… really a ‘dyad’

Social communication and interaction.

Restricted, repetitive patterns of behaviour, interests or activities.

And… More emphasis on sensory issues What does that really mean? (1) Social and Emotional Difficulties with: - Friendships - Managing unstructured parts of the day - Working co-operatively What does that really mean? (2) Language and Communication

Difficulties with: - Processing and retaining verbal information - Understanding jokes, sarcasm, social use of language, reading between the lines (literal interpretations) - Body language and facial gestures What does that really mean? (3) Imagination (Flexibility of Thought)

Difficulties with: - Coping with change - Generalisation - Empathy (but… the double-empathy problem) But also…

• Sensory issues (hyper or hypo) • Anxiety and depression • Knock-on physical effects • Sense of identity • Poor balance / bad at sports / clumsy • Food intolerances / bad tummies • Memory…? (‘selective’) • • Strong sense of right and wrong and sticking to the rules • Conventional presentation for unconventional reasons • THERE IS A DISTINCT LACK OF RESEARCH! Alexithymia

May or may not be good at ‘cognitive empathy’ and reading other people, but very poor at noticing own emotions, unless obvious

Need extra time to process information or answer questions anyway, especially about feelings. May need help to work it out. Autism and Mental Health

Particularly vulnerable to mental health problems 65% individuals have a psychiatric disorder (Ghaziuddin et al 1998) Often regarded as having ‘treatment resistant’ mental illnesses (Dossetor, 2007) Difficulties in communication mean anxiety and depression goes undiagnosed and untreated (Howlin 1997) Autism and Mental Health (2)

Anxiety – Almost universal! Depression – Awareness of difference, social exclusion, bullying, maintaining relationships and jobs, sensory differences, etc) PTSD – more common than we think, experiencing events in a more stressful and threatening way due to differences in understanding the world, visual memories more prone to intrusive flashbacks Drug/Alcohol – self-medicate to reduce inhibitions Autism and Mental Health (3)

Phobias – for unconventional reasons? OCD – ordering, hoarding, routine, repeated questioning, overlapping with Tourette’s/tic-like disorders and need to differentiate from coping mechanisms & special interests ADHD – 31% meet criteria for ADHD (Leyfer et al 2006) 65% inattentive, 12% hyperactive, 23% combined Eating disorders – 20% of anorexia cases could be diagnosed as ASD (Gillberg et al 1994-5) Autism and Mental Health (4)

Catatonic-like symptoms – increased passivity, slowness, initiating and completing actions. Also, increase in repetitive behaviour, reversal of day and night. Psychosis/delusional beliefs – paranoid ideation (being treated unfairly), grandiosity are prevalent. Often linked to everyday worries and anxieties, acute and stress-related, attempts to interpret a confusing world and other people. – common misdiagnosis, but no evidence of increased incidence with autism. Borderline PD – common misdiagnosis for autism Autism and Mental Health (5)

What is autism and what is a mental health issue? BE CAREFUL! A need for specialist approaches and attitudes to commissioning

- Recovery model / throughput are not helpful - Kingwood Trust and ASPiration service - Personal experience and Coventry research Communication

Differences may include: - Non-verbal, or limited speech - Highly articulate (but… what is actually being processed?) - Understanding language - Literal interpretation - Non-verbal communication (reading and showing) - Andrew speaks Portuguese, but… Strategies

- Say less (My TEFL experience) - Wait for an answer (6-second rule) - Check understanding ( / The paradox of choice) - Watch your language and don’t make promises you can’t keep (“I’ll be back in 5 minutes”). Avoid the world of ‘-ish’ and build trust - Patience (50 Shades Safe Words!) - Teach, not cure - RESPECT THE AUTISM! Social Interaction

Differences may include: - Preference for being alone and avoiding interaction - Initiation of / response to social contact - Eye-contact Social Imagination

Differences may include: - Focused interests (and not knowing when focus needs to stop) - Imaginative thought - Reading between the lines / taking things at face value / not spotting ulterior motives - Desire for routine and sameness (but… ) - Adaptation to change - Organisation and planning (lists, pre-knowledge) Sensory processing

How many senses are there? - Visual - Auditory - Olfactory - Gustatory - Tactile - Proprioceptive - Vestibular Sensory processing (2)

Differences may include: - Hyper and Hypo - Mono-processing (one thing at a time) - Filtering And may lead to: - Poor balance/co-ordination, unusual walk, dizziness - Rocking, flapping, jumping, ‘tics’ - Unusual reaction to pain - Dislike of touching, hearing/light/patterns sensitivity - Dislike of certain clothing - Impact on diet and eating Sensory processing (3)

“I have a constant sensory fidgeting, making it hard to concentrate.” “It’s overwhelming” “I’m constantly thinking about what others are thinking of me” “Sensory sensitivity in any form can make it difficult to concentrate, to trust, at attending to things other than the source of hypersensitivity to join in or to relax. If the discomfort or distraction is extreme enough, they can distract from the abilities to learn.” (Donna Williams) “I have no idea what ‘relaxed’ means or would feel like” And don’t forget…

• Anxiety, depression & PTSD • Knock-on physical effects • Sense of identity • Alexithymia Anxiety

“Imagine how you felt when you did something really anxiety provoking, such as your first public speaking engagement… Now just imagine if you felt that way most of the time for no reason” (Temple Grandin)

Possible Causes of increased anxiety • Communication • Emotional responses (inc ‘Am I getting it right?’) • Environment • Sensory differences • Interaction • Planning and preparation and choice • Unfamiliar experiences and changes to familiar environments What kind of things / areas do you need to think about? Adapting Practice

Issues include: - Environment - Session structures - Visual rather than reading - ‘Internal vocabulary’ may be different - Processing information - Sometimes doing the opposite of ‘best practice’ for non-autistic people Adapting Practice: Environment

What should we consider? Environment

Lighting Noise People Waiting room Clear signs Partitions Clutter First and last appts Adaptations: Session Structure

What should we consider? Session Structure

Duration Tel or face-to-face Intervals between sessions Importance of agenda- setting Reminders for appts (e.g. by text) Keep it Visual! Keep it Visual!

Use of pictures/photos Use of diagrams/Body or emotion maps Having handouts that back up what you have said Use of session summaries Use of multi-media / apps Make it appropriate to the person (e.g. use any special interest) Watch your language! Language

Avoid metaphors / abstracts Clear / simple Pacing and processing time Backed up with visuals Find out how they talk about their emotions and inner world More ‘Dos’ than ‘Donts’ Always check, check and check again! Don’t overload! Self Awareness: Laying the Foundations

Spend time checking out awareness of thoughts, feelings, cognitions, behaviours Explore/explain the links between thoughts and feelings, etc. Remember to keep this visual and accessible Use their language, not yours Example: My Feelings Sheet

My Feelings

Sometimes it can be difficult to know how we are feeling. Maybe we feel upset, but we are not sure if we are sad or anxious or angry.

It can be helpful to write down what we do, what we think and what our bodies are doing to help us recognise our feelings.

So let's first think about being sad… Behavioural Techniques

Relaxation and sensory techniques Chill-out boxes Sleep hygiene Exercise NB: remember any adaptations when setting these up. Other Behavioural Things

Nature (pets, gardens, etc) Concrete relaxation techniques (mindful activity, etc) Solitude / low arousal Increase opportunities for self-expression (art, music) Use sensory stuff to help relax Cognitive Interventions

Thought diaries Panic diaries Problem solving Worry management

With autism, remember it’s often a case of ‘cognitive deficit’ rather than ‘cognitive distortions’, so that information giving and developing skills around managing thoughts are more useful than trying to thought-challenge, per se. i.e. they are often unable to think of alternatives due to cognitive deficits. Summary

Use of the special interests Be prepared to give an opinion sometimes (helps the person learn) Be prepared to lead and give structure Choice can be overwhelming, so sometimes better to limit it RESPECT THE AUTISM! Watch out for…

Misdiagnosis due to other underlying issues E.g. “Do you hear voices?” Yes (but not in my head…) Eating disorder, or related to presentation and texture of food? OCD or linked to routines and sensory issues? Phobia or literal interpretation? (If you sit too close to that screen, you’ll get square eyes) Becoming mired in ‘best practice’ and YOUR way of doing things. DON’T steer away from safety behaviours if these comfort the autistic person (e.g. earplugs, stress ball, favourite pen) Conventional presentation for unconventional reasons Scared of dogs, but not because they bite and bark Over to you…

What things might you personally change, or how might you work differently with an autistic client? Final thoughts

“The thinking is different, potentially highly original, often misunderstood, but not defective” (Tony Attwood)

“When you live in a world where people think it is a compliment to tell you ‘but you seem normal’, and where you are under constant pressure to appear as non-autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information” (Lydia Brown)

“I am different, not less” (Temple Grandin)