Every change for a person with autism is difficult. ..

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

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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.

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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

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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

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Life changes

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

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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 WOULDNT
  WE ALL???

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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?

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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

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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?

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Change How to make it easier for
people with autism

• Communication
• Dont rely only on verbal communication -
• Put it in writing/ picture form
• Use written plans and timetables
• Visual schedules
• Use objects, photos, 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

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Change How to make it easier for
people with autism

• When supporting a pupil through transition
• Ensure youve got their attention - begin with a
  name
• Dont assume the individual attending to you, or
  that he knows it is him who is being addressed
• Allow time for information to be processed
• Dont nag , rephrase or use rapid
  questions/answers

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Change How to make it easier for
people with autism

• Recognise the stress involved in transition
• Dont overload with information
• Be clear and concise
• Teach waiting and turn-taking skills
• Avoid confrontations
• Dont crowd - give physical/personal space

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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,

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Supporting life changesKey strategies

• Give plenty of warning of any change in
  activities
• Give individualised instruction dont 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

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Adolescence- physical, psychological and
social changes

• Information giving become scientific
• Prepare for what is to come
• Social stories
• School curriculum
• Peer support

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Family events

• Moving house
• Practical issues unlocked doors, packing,
  unpacking, changes to routine
• Reduce factors that cause stress- waiting,
  physical contact, ambiguity, overload
• Cant see the point
• A new car, holiday abroad
• A new sibling
• Dont take the behaviour personally - Examine
  what the behaviour communicates

22
Supporting life changes

• School holidays
• Recognise this?
• Childs 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

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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
  dont 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

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Events and customs

• Christmas surprises
• What if you dont 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

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What is a transition?

• Transition is all about what the next thing is,
  and the steps which will take you there
• Wendy Lawson 2002

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Transition key themes

• Individual planning
• Person centred
• STRUCTURE to support transition
• PROACTIVE/ focused approach
• Review and revision
• COHERENT planning
• Links - collaboration

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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

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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

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Choice

• Difficulties in making choices involve
• Lack of awareness of options
• So called Poverty of imagination
• Dreams, aspirations, desires
• Do what Ive always done
• Easier not to make than make a choice

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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

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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 ones
  mind
• Need to accept that some may choose an
  alternative way of life.

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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

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Memory Problems

• Poor personal episodic memory
• Good rote memory
• Problems accessing memories of past experiences
• Cant draw on past experience to solve problems

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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

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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

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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

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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

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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

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What is Person Centred Planning?

• A toolkit containing a range of techniques to
  elicit a persons dreams, expectations and needs
  for the future.
• A proactive framework to proactively plan for
  this future, thus maximising outcomes

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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

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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.

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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

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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..

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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 doesnt 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 Aspergers syndrome

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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.

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Appendices

• Transition Action Groups

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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

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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

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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.

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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
•  

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Carers the role of the family

• parents expectations of their childs future
• familys 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

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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

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Commitment- taking control with TAGs

• 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

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To what end- TAGs

• 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.