autism and change– overcoming the barriers for people on the autistic spectrum jacqui ashton smith...
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Autism and change–
Overcoming the barriers for people on the autistic
spectrum
Jacqui Ashton Smith
Note: Autism refers to the autistic spectrum
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
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.
Change and Transition – What is it?
Micro levelMacro levelWhat skills are requiredWhy it is difficult for people with autism Key themes in transition and changeWho needs to be involvedThings for consideration
Change & Transition – Micro level
one room to anotherbetween activitieshome to schoolschool to adulthoodhome and workinconsistency
Other changes and transitions
Life is a rollercoaster – a baffling and incomprehensible world
disruption of routines sensory transitions At school:
assemblysubject teachingsupply staff to cover absencerescheduling of activitiesa new bus route
Transition – Macro level
5 years – early years into school11 years – secondary transfer(inclusion in mainstream provision)14 years – UK transition review16 years – Continued/Further education19 years – Leaving school
adult placementfurther/ higher educationemployment
Life changes
Adolescence- physical, psychological and social changes
School holidays Moving house Divorce A new sibling Death Christmas surprises A new car, holiday abroad,
Why is change difficult?
Difficulty in predicting eventsDislike of changeA focus and determination to preserve samenessRitualistic and repetitive routinesHigh levels of anxietyLack of flexibility of thoughtDifficulties with choice and decision makingNeeding to keep in control
Any more ideas…….
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???
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?
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
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?
Change – How to make it easier for people with autism
CommunicationDon’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
Change – How to make it easier for people with autism
Give clear rules and be consistent
Check that you have been understood correctlyMean what you say and follow it throughUse language that is clear, precise and concrete, unambiguousAlways forewarn
– Tell the pupil what to expect– Give plenty of notice
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
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
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,
Supporting life changesKey strategies
Give plenty of warning of any change in activitiesGive individualised instruction – don’t rely on general instructionsAccompany verbal instructions with visual cuesProvide a timetable using pictures, symbols or wordsGive an object of reference as a reminderAllow the child to make some choices and have some control
Adolescence- physical, psychological and social changes
Information giving – become scientific Prepare for what is to come Social stories School curriculum Peer support
Family events
Moving house Practical issues – unlocked doors, packing, unpacking, changes to routineReduce 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
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 schoolThe child with autisms need for uniformity, structure and routine
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 behaviourSocial stories and comic strip conversationsMaximum use of visual cues to minimise dependence on abstract thinking
Events and customs
Christmas surprises
What if you don’t like clutter, noise, excess social contact, surprises?
Transition- what skills are required?
Problem solvingDecision makingCompare optionsReview / Stick to decisions madePlanningPerseverance
What is a transition?
Transition is all about what the next thing is, and the steps which will take you there’
Wendy Lawson 2002
Transition – key themes
Individual planningPerson centredSTRUCTURE to support transitionPROACTIVE/ focused approachReview and revisionCOHERENT planningLinks - collaboration
Why behaviour difficulties may occur during transition
Often due to:
fear of the unknown/ unfamiliar confusion, anxiety and insecurityUnsure of what is expected an attempt to keep the environment the samelack of understanding of social rulesinappropriate means of expression/communicationinterference with repetitive/ preferred activities
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
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
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
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.
Problem solving and decision making
Difficulties with problem solving………..
ChoiceComparing optionsWeighing up consequencesBeing able to learn from mistakes
What is problem solving?
Why is it important?
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
Memory Problems
Poor ‘personal episodic memory’Good rote memory
• Problems accessing memories of past experiences• Can’t draw on past experience to solve problems
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
Implications for teaching and Learning
Difficulties in coping with change and transition due to…
Difficulties in building on previous learningDifficulties in generalisationDifficulties in developing independenceDifficulties in developing awareness of learning
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
Curriculum to promote the skills needed to make positive choice and changes
Learning set in a broad range of settings including the communityFrequent opportunities for feedback and self reflection Emphasis on developing awareness of thinking and learning processesEmphasis on developing independence
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
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
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
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
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.
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
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…..
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
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. 1999Transitioning: Making the Move Towards Inclusion. Maureen Bennie. Autism today. 2000Addressing 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.
Appendices
Transition Action Groups
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
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
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.
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
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
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
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
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
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.