Autism and change Overcoming the barriers for people on the autistic spectrum

1.    Autism and change� Overcoming the barriers for people on the autistic spectrum Jacqui Ashton Smith Note: Autism refers to the autistic spectrum

2. How People with autism are affected by change Neurotypicals� can use several �channels� simultaneously e.g.visual,auditory and spatial. They are non-literals � understanding incomplete concepts. People with autism have monotropism (single channelling). They prefer to use one channel at a time. They have an � attention tunnel� Wendy Lawson 2002

3. Difficulty with Understanding Concepts Every change for a person with autism is difficult. These will vary in intensity of difficulty according to the stressors in each situation. Conceptualising, and anticipating consequences of change is harder if information from only one channel is being processed.

4. Change and Transition � What is it? Micro level Macro level What skills are required Why it is difficult for people with autism Key themes in transition and change Who needs to be involved Things for consideration

5. Change & Transition � Micro level one room to another between activities home to school school to adulthood home and work inconsistency

6. Other changes and transitions Life is a rollercoaster � a baffling and incomprehensible world disruption of routines sensory transitions At school: assembly subject teaching supply staff to cover absence rescheduling of activities a new bus route

7. Transition � Macro level 5 years � early years into school 11 years � secondary transfer (inclusion in mainstream provision) 14 years � UK transition review 16 years � Continued/Further education 19 years � Leaving school adult placement further/ higher education employment

8. Life changes Adolescence- physical, psychological and social changes School holidays Moving house Divorce A new sibling Death Christmas surprises A new car, holiday abroad,

9. Why is change difficult? Difficulty in predicting events Dislike of change A focus and determination to preserve sameness Ritualistic and repetitive routines High levels of anxiety Lack of flexibility of thought Difficulties with choice and decision making Needing to keep in control Any more ideas��.

10. Children with autism have difficulty in processing information which is new and unpredictable. Changes and transitions are uncontrollable and unknown events that just happen to them They lose control and are confronted by confusing and frightening events NO WONDER THESE CHILDREN AVOID CHANGE � WOULDN�T WE ALL???

11. Why is change so difficult? Difficulties with making �connections� � enhanced discrimination and reduced generalisation � inability to recognise similarities between stimuli or sensations�� Dr Fiona Scott Everything is new and for the first time?

12. Why is change so difficult? Difficulties in switching from one perceptual mode to another � a micro delay but has an effect. Scared of the new and unfamiliar therefore need structured choice Dependence on routines � a situation, a performance, a sentence is not regarded as complete if it is not made up of exactly the same elements that were present at the time the child was first confronted with it.� Kanner. 1943

13. Change � How to make it easier for people with autism General rules �Structure Free choice causes anxiety Things must have a beginning, a middle and a clear ending The pupil should always know where do I have to be? what am I doing? how much do I have to do? when will I know I have finished? and what will I do next?

14. Change � How to make it easier for people with autism Communication Don�t rely only on verbal communication - Put it in writing/ picture form Use written plans and timetables Visual schedules Use objects, photo�s, symbols Build in planned, regular breaks Avoid fatigue Allow pupils time to �de-stress� and relax Provide clearly defined breaks between structured activities Balance active and passive activities

15. Change � How to make it easier for people with autism Give clear rules and be consistent Check that you have been understood correctly Mean what you say and follow it through Use language that is clear, precise and concrete, unambiguous Always forewarn Tell the pupil what to expect Give plenty of notice

16. Change � How to make it easier for people with autism When supporting a pupil through transition Ensure you�ve got their attention - begin with a name Don�t assume the individual attending to you, or that he knows it is him who is being addressed Allow time for information to be processed Don�t �nag� , rephrase or use rapid questions/answers

17. Change � How to make it easier for people with autism Recognise the stress involved in transition Don�t overload with information Be clear and concise Teach waiting and turn-taking skills Avoid confrontations Don�t crowd - give physical/personal space

18. Supporting life changes Adolescence- physical, psychological and social changes School holidays Moving house Divorce A new sibling Death Christmas surprises A new car, holiday abroad,

19. Supporting life changesKey strategies Give plenty of warning of any change in activities Give individualised instruction � don�t rely on general instructions Accompany verbal instructions with visual cues Provide a timetable using pictures, symbols or words Give an object of reference as a reminder Allow the child to make some choices and have some control

20.  Adolescence- physical, psychological and social changes Information giving � become scientific Prepare for what is to come Social stories School curriculum Peer support

21. Family events  Moving house Practical issues � unlocked doors, packing, unpacking, changes to routine Reduce factors that cause stress- waiting, physical contact, ambiguity, overload Can�t see the point A new car, holiday abroad A new sibling Don�t take the behaviour personally - Examine what the behaviour communicates

22. Supporting life changes School holidays Recognise this? Child�s behaviour starts to deteriorate at start of holiday, improves as new routines settle in and deteriorates when returns to school The child with autisms need for uniformity, structure and routine

23. Loss Divorce or death How do you explain something so socially complex or abstract? It is not that children with autism are unable to form emotional bonds, perhaps it is that they don�t know how to express them. Autism does not preclude the ability to empathise with the emotions of others � they do find it difficult to express these emotions though. Look out for changes in behaviour Social stories and comic strip conversations Maximum use of visual cues to minimise dependence on abstract thinking

24. Events and customs Christmas surprises What if you don�t like clutter, noise, excess social contact, surprises?

25. Transition- what skills are required? Problem solving Decision making Compare options Review / Stick to decisions made Planning Perseverance

26. What is a transition? Transition is all about what the next thing is, and the steps which will take you there� Wendy Lawson 2002

27. Transition � key themes Individual planning Person centred STRUCTURE to support transition PROACTIVE/ focused approach Review and revision COHERENT planning Links - collaboration

28. Why behaviour difficulties may occur during transition Often due to: fear of the unknown/ unfamiliar confusion, anxiety and insecurity Unsure of what is expected an attempt to keep the environment the same lack of understanding of social rules inappropriate means of expression/communication interference with repetitive/ preferred activities

29. How do we teach the skills needed cope positively with change? Being in control � How can we achieve this? Making choices Problem solving Decision making Comparing options Consequence of actions and decisions

30. Choice Difficulties in making choices involve: Lack of awareness of options So called �Poverty of imagination� Dreams, aspirations, desires Do what I�ve always done Easier not to make than make a choice

31. Advocacy and autism Interpret, not advocate � give them the tools. Need �mentors� Recognise the �dilemma� of choice- not knowing what to choose Inappropriate choices- lack of cause and effect and sense of consequence: How does your decision impact on others? Motivation � Lack of understanding of rights or not wanting to make decisions Biggest problem is �time� The complexity

32. Advocacy - Choice Presumption of shared values by advocates may cause problems People with ASD- Limited experiences = limited choice Small-steps process Teach the understanding that one can change one�s mind Need to accept that some may choose an alternative way of life.

33. Problem solving and decision making Difficulties with problem solving���.. Choice Comparing options Weighing up consequences Being able to learn from mistakes What is problem solving? Why is it important?

34. Understanding Self Children with autism have a fundamental difficulty in developing an understanding of self Problems in developing an experiencing self May know something has happened but not fully grasp that it has happened to them Difficult for non autistic thinkers to understand. There is no conscious distinction for most people between having an experience and thinking about the experience and how they feel about it. Can�t learn from something if you don�t know you have done it. Difficult for non autistic thinkers to understand. There is no conscious distinction for most people between having an experience and thinking about the experience and how they feel about it. Can�t learn from something if you don�t know you have done it.

35. Memory Problems Poor �personal episodic memory� Good rote memory Problems accessing memories of past experiences Can�t draw on past experience to solve problems Children may have good memories of past experiences and this can be demonstrated by prompting them with a photograph or video. Although younger children need to first learn to recognise themselves. �That boy�s got a jumper like mine.� Problem solving often involves accessing several previous experiences and integrating them to find a solution. Demonstrated by difficulty in looking for lost objects Children may have good memories of past experiences and this can be demonstrated by prompting them with a photograph or video. Although younger children need to first learn to recognise themselves. �That boy�s got a jumper like mine.� Problem solving often involves accessing several previous experiences and integrating them to find a solution. Demonstrated by difficulty in looking for lost objects

36. Attention May have difficulties in �switching� attention May have difficulties in �integrating� stimuli from different senses May attend to detail and not grasp overall meaning May lead to highly developed skills May not be useful for general learning ability Particular details can be attractive to individuals e.g. leaves blowing in the wind on a tree seen through the classroom window pattern on an item in a picture, but not the whole picture Jigsaw skills Memory skills (e.g. timetables) General learning involves grasping meaning and integrating information so that new information emerges. Particular details can be attractive to individuals e.g. leaves blowing in the wind on a tree seen through the classroom window pattern on an item in a picture, but not the whole picture Jigsaw skills Memory skills (e.g. timetables) General learning involves grasping meaning and integrating information so that new information emerges.

37. Implications for teaching and Learning Difficulties in coping with change and transition due to� Difficulties in building on previous learning Difficulties in generalisation Difficulties in developing independence Difficulties in developing awareness of learning Generalisation Place Presentation referred to (vocabulary, categorisation difficulties) Person presenting task Learning within another task, e.g using a newly learnt spelling Independence Schools are full of helpful people! Need to set up situations where pupils can try out skills safely Pupils may need own prompts, e.g. symbol card showing tasks that could be chosen during choice time, or schedule for dressing after PE. Awareness of learning Time to point out and focus on the learning involved in a task e.g Listening, directing children on what to attend to, picking out common features and individual steps in several similar tasks before children try on their own. Different approach to that used with non autistic thinkers. Pointing out to children what they are doing when they are thinking/learning: e.g. I can see you are thinking about � I can see you are listening carefully Well done you found out the answer Generalisation Place Presentation referred to (vocabulary, categorisation difficulties) Person presenting task Learning within another task, e.g using a newly learnt spelling Independence Schools are full of helpful people! Need to set up situations where pupils can try out skills safely Pupils may need own prompts, e.g. symbol card showing tasks that could be chosen during choice time, or schedule for dressing after PE. Awareness of learning Time to point out and focus on the learning involved in a task e.g Listening, directing children on what to attend to, picking out common features and individual steps in several similar tasks before children try on their own. Different approach to that used with non autistic thinkers. Pointing out to children what they are doing when they are thinking/learning: e.g. I can see you are thinking about � I can see you are listening carefully Well done you found out the answer

38. Strategies to teach children to problem solve Best teaching takes account of the learning style of children with autism Takes account of individual styles Has clear meaning and purpose Considers tasks from an autistic view Promotes self awareness and independence Whilst children with autism all have features in common all are individuals. Consider: Visual learners Special interests Distractions and attention problems Difficulties in integrating information to grasp the intended meaning Therefore attention and learning better when the meaning and purpose of activities are clear, and where possible relate to real life Tasks should be viewed to consider whether: the content will make sense whether the presentation will create attention problems whether opportunities for independence are offeredWhilst children with autism all have features in common all are individuals. Consider: Visual learners Special interests Distractions and attention problems Difficulties in integrating information to grasp the intended meaning Therefore attention and learning better when the meaning and purpose of activities are clear, and where possible relate to real life Tasks should be viewed to consider whether: the content will make sense whether the presentation will create attention problems whether opportunities for independence are offered

39. Curriculum to promote the skills needed to make positive choice and changes Learning set in a broad range of settings including the community Frequent opportunities for feedback and self reflection Emphasis on developing awareness of thinking and learning processes Emphasis on developing independence

40. Change and Independence Key factors S Structured approaches P Planned, proactive, positive E Person centred, Individualised programmes L Low arousal - Reduction of anxiety through preparation L Linking aspects of learning: cause and effect

41. What is Person Centred Planning? A toolkit containing a range of techniques to elicit a person�s dreams, expectations and needs for the future. A proactive framework to proactively plan for this future, thus maximising outcomes

42. Why is PCP difficult for people with autism? Same difficulties they experience with change Decision making, Choice, Problem solving Need to be taught these skills Need advocates Need to be taught self advocacy

43. What have young people with ASD been saying about their experience of transition Not involved in planning Decision made by others Hopes & aspirations ignored or viewed as unrealistic No information given Being frightened of the unknown Being frightened of the known Not knowing how I am doing Trying to be normal Richard Mills. Director of Services.NAS

44. The key role of parents in transition continuity of perspective in-depth knowledge of the child partnership and advocacy effective link between all life stages generalisation of skills in a range of settings acquired specialist knowledge in autism research indicates that transition is most likely to be effective with the full involvement of parents.

45. Things that made a difference to parents Knowledge and information sharing Clarity Visible / transparent process Planning and Preparation Communication and sharing Continuity Visible process Back up systems in place Ongoing support after transition For parents For the young person

46. In conclusion � Change and transition Transition is a series of life long processes A major source of anxiety planning reduces stress Need proactive, individualised programmes and Multi agency collaboration Remember � Transition is a process and not an event�..

47. Think on this��. Will I know where to go if I find the way? Will anything change or will things always be the same? It doesn�t really matter to me if I am here or there or somewhere in between, so long as I know where I am going� Liane Holliday Willey �Pretending to be Normal� Living with Asperger�s syndrome

48. Sources and Acknowledgements Richard Mills. Director of Research. National Autistic Society. U.K. Mike Collins. Education Manager. National Autistic Society. U.K Chris Mitchell. Deputy Chief Executive. ARC.United Kingdom. Staff, Parents & Pupils of the Helen Allison School Members of CoSPPA Positive Health in Transition. A guide to effective and reflective transition planning for young people with learning disabilities. Pearson, Flynn, Margham and Russell. NDT. 1999 Transitioning: Making the Move Towards Inclusion. Maureen Bennie. Autism today. 2000 Addressing the system failures for children with autism. Bovell, Tissot and Thomas. Paper- Autism 99. Pretending to be normal. Living with Asperger Syndrome. Liaine Holliday Willey.

49. Appendices Transition Action Groups

50. Transition Action Groups It is our intention that the transition process through the medium of the Transition Action Group will provide a highly visible and powerful means of ensuring proper transitions from school to adulthood. Richard Mills. Ex Director of Services. National Autistic Society. United Kingdom

51. The �C� checklist � ������ Code good practice.� Curriculum responsibility of the school � ������� Carers role of the parents. � ������� Child rights of the child. � ������� Collaboration involving other professionals � ������� Co-ordination role of the Transition co-ordinator. � ������� Commitment Partnership in planning - Transition Action Groups 

52. Code In England - Education Act. 1993. � The Code of practice� ������� major review of Transition planning � introducing �good practice� ������� 14 plus Annual review - Transition plan ������� which will draw together information plan for the transition to adult life.

53. Curriculum- the role of the school curriculum needs during the transition� role in the community and access to community, social and leisure facilities� new educational and vocational skills, careers guidance and vocational training � Personal, Social and Health Education � the role of an adult in society and changing roles and responsibilities � transferring from school to a Post 16 provision and leaving home �

54. Carers � the role of the family parents expectations of their child�s future family�s needs, expectations, wishes and aspirations � addressing the fears/concerns of parents develop �adult� personal, social and life skills additional support for the family

55. Child � the rights of pupils encouraged and enabled to contribute to his/her own transition plan decisions about the future hopes and aspirations for the future realistic and achievable information needed to make informed choices

56. Collaboration � involving other professionals efficient working relationships effective and coherent plans for transition additional needs assessed and good information transfer Is education after the age of 16 appropriate? advocacy and advice , location of services , health or welfare needs assessment arrangements -clear, relevant, shared Person Centred Planning

57. Commitment- taking control with TAG�s partnership - representation from staff, parents and adult service providers proactive planning & termly meetings to co-ordinate and monitor transition named person responsible for transition emotional support and guidance training and knowledge of what is available, Parent Information Group meetings, Parent Support groups monitoring of Transition Action Group

58. To what end- TAG�s Partnership in planning - taking control with co-ordinated planning Transition planning process is visible and comprehensible - not a �paper exercise� - a proactive stance �See� checklist, we will enable parents to become more knowledgeable of the process. Monitoring role To enable other agencies, who may have only scant acquaintance with Autistic Spectrum Disorders, to make realistic provision for young people with such complex and frequently �invisible� needs.