Supporting People with Autism Spectrum Disorder to Access Health Care

1. Supporting People with Autism Spectrum Disorder to Access Health Care Sam Rich Debra Moore

2. Welcome and introductions • Housekeeping • Agenda • Breaks • Mobile phones • Group work

3. Background • Autism Act 2009 • Requires local authorities to collect and share information about people with autism and aims to improve local planning and delivery of services http://www.opsi.gov.uk

4. Background • Autism Strategy for adults with autism – Fulfilling and rewarding lives was published on the 3rd March 2010 by DH • New strategy includes plans for a National Board to lead the changes, guidance on making public services accessible and autism awareness training

5. A Better Future consultationNational Context - accessible healthcare • Stakeholders argued that reasonable adjustments are not always made for adults with an ASC in healthcare settings • There were concerns that additional health problems in adults with an ASC can go unrecognised in what may be described as diagnostic overshadowing

6. A Better Future consultationPolicy Context – accessible healthcare • Concern was expressed that low awareness of ASCs among mental health professionals can lead to misdiagnosis and inappropriate treatment. • Calls were made for more to be done to ensure that ASC was included in undergraduate and postgraduate clinical training. • Stakeholders also suggested that nonmedical staff in the healthcare system have some awareness training in ASCs

7. Survey of General Practitioners in England on the subject of autism not very confident! • Most respondents said in either type of autism diagnosis they were ‘not very confident’ that patients are receiving appropriate and adequate care • ‘Low-functioning’ autism - 54% of respondents selected ‘not very confident’ • ‘High-functioning’ autism or Asperger’s Syndrome – 52% of respondents selected ‘not very confident’

8. Training • Four out of five GPs (80%) indicate that they require additional guidance and training to identify and manage patients with ASD more effectively.

9. So what is an Autism Spectrum Disorder?Group work

10. Autism • Autism is a lifelong developmental disability, sometimes referred to as Autistic Spectrum Disorder (ASD) or Autistic Spectrum Condition (ASC). • Its causes are not fully understood, although there is some evidence that genetic factors are involved. • The term ‘spectrum’ is used because, while all people with autism share three main areas of difficulty their condition affects them in different ways Audit Office Report 2009

11. The Triad of Impairment(Wing and Gould 1979) • Flexibility of Thought • Social Understanding • Communication Often accompanied by obsessions, rituals compulsions and different sensory perceptions

12. Key facts • 15% of people with autism have a job • 49% of people with autism live at home with their parents • Around half of people with autism have a learning disability (Audit Office 2005)

13. So what does all of this mean with regard to accessing Health Care Services?

14. Flexibility of Thought • If you are unable to reflect on past experiences, you might not recognise when you have a re-occurring illness and ask for help or know that you need to make an appointment with your GP, dentist or optician • Without the ability to think flexibly it is difficult to make plans and decisions about how access to services or treatment

15. Flexibility of thought • People who lack flexibility of thought often struggle to structure their time and plan their day which might include attending appointments or remembering to take medication • If changes are required to treatment it might take the person longer to process the information in order to make a decision

16. Flexibility of thought • Because of the difficulties around flexible thinking people often struggle to generalise. I can imagine that each time I go to the dentist or the optician, even if its a different place and a different person the things they do will be similar, this is based on my past experiences and my ability to compare a previous experience with what is happening now. • If I couldn't do this I would probably find people’s behaviour unpredictable and frightening - I might then become uncooperative. • If I have Autism don't assume because I have been here before and seen you before that I understand what is happening. You might need to explain it to me each time

17. Social Understanding • Lots of health care environments have unwritten social codes that we expect members of the public to abide by • Queuing systems • Waiting rooms • Explaining to the professional what the problem is or what the symptoms are

18. Social understanding • The natural ability that neuro- typical people have for communicating verbally and non verbally, thinking flexibly and reading social situations doesn't always happen for people with autism, these skills might need to be taught • So if we don’t teach people we shouldn’t be surprised if they get it wrong!

19. Social understanding “Ben has real problems with social interaction, but if someone came into our house they wouldn’t realise this, as he is quite sociable and relaxed there. When he is out , he goes up to people and licks their feet or grins right into their faces and keeps saying ‘what’s your name?’. However many times they answer he keeps grinning and saying the same thing over again” (Luke Jackson)

20. Communication • The person may seem indifferent to attempts to communicate • The person may not realise you are talking to them • The person may communicate using gesture instead of words • The person may communicate by taking you to what they want

21. Communication • The person may communicate using signs, symbols or pictures • The person may use echolalia- repeating words and or phrases • Difficulty reading and interpreting verbal and non verbal communication (linked with not being able to predict another persons actions) • The person may literally interpret language

22. Communication • People’s expressive communication and receptive communication don’t always match • Never make an assumption that because someone doesn’t speak they don’t understand • Sometimes people with Autism can speak and choose not to

23. Communication • People who don’t have autism are actually very confusing (neuro-typical people) • We rarely say what we mean, in fact often say the opposite to what we mean, and we assume the other person automatically knows this because we pulled a funny face as we said it • We use lots of metaphors which are not helpful if you literally interpret what is said

24. Break

25. Obsessions Rituals and Compulsions • The reasons that these behaviours occur are varied and individual to the person. They are key features associated with an autism spectrum disorder. They may include: • Long routines that have to take place, starting again if they are interrupted • Lining things up, turning off lights, turning around 3 times, touching all the surfaces • Hand flapping, flicking fingers, rocking, jumping, spinning, twirling, head banging or other movements of the body (idiosyncratic mannerisms)

26. Obsessions, compulsions and rituals • It is very important that you try and understand why the person is doing this and the function it serves before you interfere and try to stop them • It may be a coping mechanism • It may be stimulation • It may be calming • If you stop it without fulfilling the need in a different way they are likely to replace the behaviour with something else

27. Sensory Perceptions • Many people on the autism spectrum will experience different sensory perceptions • For some people this will be an increase in sensitivity- Hyper • Or a decrease in sensitivity- Hypo • This can lead people to engage in many different behaviours as they may seek the sensory input or go to great lengths to avoid it • This may lead to fearful reactions and possible behavioural challenges

28. The Sensory Systems Touch- Tactile System Taste- Gustatory system Smell- Olfactory system Hearing- Auditory system Sight- Visual system Balance- Vestibular system Body Awareness- Proprioceptive system

29. Hearing “My hearing is like having a sound amplifier set on maximum loudness. My ears are like a microphone that pick up and amplifies sound. I have 2 choices: 1) Turn my ears on and get deluged with sound or 2) shut my ears off. Mother told me that sometimes I acted like I was deaf. I discovered I could shut out painful sounds by engaging in rhythmic stereotypical autistic behaviour. Sometimes I tune out” Temple Grandin

30. Touch “stiff scratching clothes or wool against my skin is sand paper ripping off raw nerve endings” Temple Grandin

31. If I was made to touch jewellery, I felt a sharp whistling metallic noise in my ears, and my stomach turned over……these physical sensations produced by jewellery frightened me and I transferred that terror onto jewellery itself, so that the very sight of it terrified me Gunilla Gerland-1996 A real person. Life on the outside

32. Why is the person behaving like this? Sensory seeking • Very active • Always on the go • Excitable enjoys sensory stimulus Sensory Avoiding • May seem uncooperative • Rule bound • Driven by ritual • Needs structure • Dislikes change

33. Issues to consider • Lots of people • Bright lights • Lots of notices (visual clutter) • Queuing systems • Long waiting times • Strange/ strong smells

34. Question In your workplace do you think you have any ‘barrier’ or could be improved re- access for people with ASC e.g. electronic booking in

35. lunch

36. Transition • Because people cannot always effectively plan and sequence time and activities or follow natural/environmental cues they may become very stressed at times of change • These can be little changes or big ones

37. Transition • Macro- moving house, moving bedrooms, loss, bereavement • Micro- stopping and starting an activity, moving from one room to another, change to daily routine, spontaneous activities

38. Health care environments and appointments can often create micro transition's for the individual • Arrive at an appointment and get out of the car • Book in at reception • Sit in the waiting room • Go to another room to see the doctor • Go to another room for a blood test and see a different person • Back to reception to book another appointment • Go to the pharmacy for a prescription

39. Quick quiz • If someone with learning disabilities and ASD cannot consent for an operation – who can decide or consent for them? • Who can do an assessment of capacity? • Who should be consulted when making a best interest decision?

40. The Mental Capacity Act • This is an area that needs to be given careful consideration in order support someone to exercise their rights around decision making and treatment options • Often this is over looked and decisions are made for people that with the right support and understanding of their Autism they could make for themselves

41. Mental Capacity • Do not assume because the person has a diagnosis of ASD that they have a learning disability • People with a diagnosis of Asperger Syndrome are likely to have an average or above average IQ

42. Assessment of Capacity • This needs to be done for each decision, because someone lacks capacity in relation to one decision does not mean they lack capacity in relation to another • Only after an assessment of capacity shows the person lacks capacity can a decision be made in a persons ‘best interests’

43. The person needs to be able to do these things...... • Understand the information given to them • Remember the information long enough to make a decision • Use or weigh up the available information • Communicate the decision in any way which can be recognised ( the person should be assisted in any way that is practical and necessary to do this)

44. Advice • Think about the environment – keep noise and distractions to a minimum • Do they need more time to process the information and communicate their decision • Use written information or visual supports • What is that persons usual form of communication (ask for communication passport, is there a SALT assessment) • Who is the best person to help them communicate and involve them • Be direct and clear with language

45. Advice • Photos • Black and white line diagrams • Social Stories • Picture boards • Include specific’s in schedules and visual timetables E.g. to show the person they are going to the X Ray department and then back to A&E • Contact info@debramooreassociates.com

46. Group work – Taking Action • Each table think about how you could better support someone with Autism in your workplace • Flexibility of Thought • Social Understanding • Communication • Obsessions, rituals compulsions • Different sensory perceptions • Transitions

47. Break

48. Reactions and behaviour Sometimes we are surprised by peoples reactions and behaviour and think people should learn to cope with change and different environments. However when you think about the difficulties people have with flexible thinking and predicting events, communication, and sensory processing how can they?

49. Reactions and behaviour A good way to support people is to help them understand and predict when change will happen, if something has to change look at what elements can stay the same, visual strategies For example - social stories, visual timetables and sequences

50. Neuro-typicalversusperson with ASD perceptions • Screaming- attention seeking • Spitting- dirty and disgusting • Asking questions over and over again- trying to wind me up. He knows the answer Screaming- blocking out the noise of the radio which is painful Stimulating to touch and smell and taste Feels nice to hear the answer, creates a situation for social interaction