educate • empower • embrace

1. educate • empower • embrace

2. Autism • The Current Perspective • Historical Context • Person Centred Understanding • The sensory reality • 3 C Pathway • Case studies • Adjusting your practise

4. Some History Written evidence from 1700’s 1910 Psychiatrist Eugen Bleuler used the word autismus to describe schizophrenic’s 1943 Kanner’s paper introduced the western world to the term autism(Latin autismus, Greek autos‘self’) 1960’sBettleheim wrote the Empty Fortress ‘Refrigerator mother’ theory 1981Wing introduced the English speaking medical world to Hans Asperger’s work, as early as the 1930’s, Asperger had described a form of ‘a high functioning autism’ 1960’sBernard Rimland and Eric Schopler dispelled theory and suggested neurobiological malfunction

5. And today … Neurological: • Uta Frith – theory of mind/executive functioning/central coherence • Simon Baron Cohen – male brain/mind blindness Practical: • Tony Attwood – wrote The Complete Guide to Asperger’s Syndrome Relationship: • Phoebe Caldwell – Intensive Interaction Neurodevelopmental Therapy: • Bob Allen – neural stimulation • Self advocacy • Temple Grandin – ‘Actually Autistic’ advocates Autistic led research: • Damien Milton – “So what exactly are autism interventions intervening with?” GAP. 15.2.2014 1000 named interventions in the field of autism. Research autism website

6. However… • CUREpharmaceutical – mood blockers • BLAMEVaccines, Magnesium, Gluten • EXCUSE FOR BAD BEHAVIOUR Dr Mike Shooter • leading child psychiatrist quoted in an article recently in the Times as saying “it’s the parents’ way out and is vastly over diagnosed.”

7. Autism generalisations • Autism myths no empathy no imagination no sense of humour don’t like people can’t focus can’t make eye contact can be cured poor parenting is an intellectual disability is a mental illness Is just boys Is just bad behaviour

8. First 3 Results On Google Noun: autism A mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. What is autism? - NAS www.autism.org.uk/about/what-is.aspx 14 Apr 2016: Autism is a lifelong, developmental disability that affects how a person ... Autism - NAS www.autism.org.uk › About autism › What is autism? 3 Oct 2017: Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support.

9. Deficit based thinking Thinking about the lack/problem/challenge Diagnostic criteria Medical model How it is talked about

11. Where does this leave us? Confused • Where does this leave autistic individuals? Struggling

12. Intervention. 2 extreme perspectives: 1. BEHAVIOUR BASEDABA , normalising, cure, DEFICIT BASED what they can’t do, problems 2. RELATIONSHIP BASED☑acceptance, empathy, adjusting our perspective, changing the environment ASSET BASEDwhat they can do, opportunities, potential

13. Act for Autism’s Clear Time Time spent with the child to build a secure base for their social and emotional wellbeing. You must be: Clear of anxiety Clear of distractions Clear of expectations

14. Act for Autism’s 3 C pathway CONNECT‘walking in the shoes of’. Empathetic connection. CALMUnderstanding the sensory world and bringing anxiety down. COMMUNICATEBuilding a trusted base for communication.

15. CuriosityBe interested in finding out as much as you can from the child and from people who know the child. CareDo this with consideration, sensitivity and warmth.

16. Communicate Calm Connect

17. At birth an explosion of synapses – nerve endings that help shape how the baby interprets and interacts with the world • Brain scans in autistic infants show there is an oversupply of synapses - too much information to be able to understand and respond appropriately • Due to overload, reciprocal communication becomes harder – basic connections are not made to enable child to relate, interact and react like peers

18. Without autism With autism Researchers found higher synapse formation in the brains of children with autism Image credit: Guomei Tang, Mark S. Sonders, CUMC

19. “There is continuing evidence to suggest that autistic infants have deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.” autism.unc.edu/resources/autism-definition-and-signs

20. “Impairments that we see in autism seem to be partly due to different parts of the brain talking too much to each other, you need to lose connections in order to develop a fine-tuned system of brain networks, because if all parts of the brain talk to all parts of the brain, all you get is noise.” Ralph-Axel Müller Neuroscientist at San Diego State University

21. Reciprocity speech self worth Vital in thedevelopment of social confidence peer relationships

22. Reciprocity “The words don’t come “ “ I get everything wrong” self identity “I don’t have any friends” “Everyone can do it and I can’t”

23. “YOU DON’T UNDERSTAND ME” “I DON’T UNDERSTAND ME” self identity “I DON’T UNDERSTAND YOU” “I DON’T UNDERSTAND WHY YOU DON’T UNDERSTAND ME”

24. 4 Areas of Difference INTERACTING PROCESSING Play, developing relationships Attention, interests, learning SENSORY COMMUNICATION Speech, comprehension, use of language Experiencing, regulating

25. See what we need to see and filter out what we don’t. Recognising something by the way it smells, influences taste. What sounds are important and where are they coming from? Sensing and discriminating tastes and flavours. Sensing and discriminating “I have touched something – what is it?”

26. ProprioceptionThe senses of position and movement of our limbs and trunk, the sense of effort, the sense of force, and the sense of heaviness. The vestibularsystem includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements.

27. INTEROCEPTION: The Eighth Sensory System Sit back and close your eyes • What do you feel inside your body? • Is your heart beating fast or slow? • Are you breathing deeply or shallowly? • Do you have to go to the bathroom? • Are your muscles tense or loose? • Are you hungry? Most of us are able to feel all of these sensations with the help of our little-known, but very important, eighth sensory system, Interoception Mahler, K. MS OTR/L

28. optimal Hyper sensitive Sensation avoiding Hypo sensitive Sensation seeking

29. organise, prioritise and activate monitor and self regulate actions utilise working memory and short term recall focus, sustain and shift focus regulate alertness sustain effort and speed manage and modulate emotions

33. Shame Melt Down Lack of appropriate support and understanding Overload Confusion Aggression Defiance Avoidance Withdrawal Isolation and anxiety build up Feelings and needs not expressed Shut Down Exhaustion The Behaviour Loop/Response Loop

34. Melt down Shut Down • Temper • Physical agitation • Repetitive movements • Physical aggression • Verbal aggression • Rampage • Dogmatic • Inflexible • Physical tension • Hide • Bolt • No expression • Non verbal • Ridged • Moaning • Stimming • Passive acceptance • Masking

35. Autism can present as mental health issues and visa versa Anxietylow mood depression self harm

36. Anxiety Low Mood Depression Self-Harm Poor Social Support Anxiety Behavioural Differences Problems in Self Management Core Problem Processing Information about Others Core Problem Processing Information about Self Core Problem with ExecutiveFunction Sensory Differences Information Overload Delayed Reciprocity

37. “You do not need to make my autism better, but you can help me feel safer in your company by showing that you understand my difficulties.” • “If I feel safer in your company I am are more open to the relationship and you will gain a deeper sense of who I am and so will I .” • “We rely on you to help us understand ourselves, but if we don’t trust you or we are too anxious, we remain closed and hurt.”

38. “the caregiver/practitioner in the field of autism is ideally a mental adventurer, someone who does not require a thank you and is open to adapting their mode of communication and social interaction, you must “empty yourself” to “tune in” • Dr Kerstin Whittemyer ACER

39. 3 C pathway – your part in this Connect Empathetic connection. Create a safe space, be a safe person. Use strategies to reduce anxiety. Beat to Beat work. Calm Build a person centered, secure base for communication of feelings and needs. Communicate

40. Connect • Before the appointment: • Gather as much information as you can about what makes the child feel safe and how their autism presents. • Send any information to the family in an autism friendly style: pictures, maps, explanations. • Consider the waiting area. • Consider the appointment time.. • During the appointment: • Validate the child, notice something about them, say their name warmly, share something of yourself, ask about what they are interested in, don’t expect eye contact. • Keep your energy consistent. • Don’t talk over them to the parents. • Explain everything you are doing and why you are doing it, calmly and slowly. • Consider the sensory environment.

41. Calm • Yourself first – modeling calmness/low and slow. • Normalise anxiety – “its ok, lots of people worry about this”. • Parental anxiety will be high, your demonstration of care and curiosity will help them too. • Have stress toys available for use. • Share calming strategies with the child. Beat to Beat work,heartbeat rhythm, breathing.

42. Communicate • Communication is 93% non verbal, what are you communicating, what are they communicating? • Create a system with them that works for them, pictures, thumbs up… • Encourage communication in any form and validate it. • Modifying your communication style. • Talk about their autism with them if they are willing.

43. The 5 point scale Ways for the child to try to communicate their feelings

45. 3 C pathway – your part in this This all to be done with : CARE CURIOSITY

46. Clear Time Time spent with the child to build a secure base for their social and emotional wellbeing. You must be: Clear Clear Clear of anxiety of distractions of expectations

47. Calming techniques SIDE BEAT BREATHE LOW SLOW

48. Hand Blow: Hold your hand up 6 inches from your mouth; slowly blow into it so you feel your breath on your palm. Move the hand away slowly. Continue breathing into the palm until you can’t feel the breath. Move the hand back in and start again. Hand Trace: Trace your right finger around your left hand moving slowly and evenly. Breathe in and out as you do, finishing with a circular movement in your palm. Repeat.

49. Make the implicit, explicit • How are you feeling? • Where does it hurt? • What’s your favorite thing? • I like doctor who, do you like doctor who? • Are you ok with me touching you arm? • I need to touch your arm because I want to help you get better, is that ok?

50. Framing information • What am I expected to do? • Where do I start? • How long will this take? • How will I know when it is finished? • What will I be doing next? • NOW • HOW • NEXT