Transcript Positive futures for people with an Autistic Spectrum

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 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
Change & Transition – Micro level
one room to another
between activities
home to school
school to adulthood
home and work
inconsistency
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
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
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 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…….
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
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Free choice causes anxiety
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Things must have a beginning, a middle and a clear ending
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The pupil should always know
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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
Communication
Don’t rely only on verbal communication 
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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
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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
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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
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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
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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
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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 changes
Key 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
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 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
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
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
Events and customs
Christmas surprises
What if you don’t like clutter, noise, excess social
contact, surprises?
Transition- what skills
are required?
Problem solving
Decision making
Compare options
Review / Stick to decisions made
Planning
Perseverance
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 planning
Person centred
STRUCTURE to support transition
PROACTIVE/ focused approach
Review and revision
COHERENT planning
Links - collaboration
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
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:
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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………..
Choice
Comparing options
Weighing up consequences
Being 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 learning
Difficulties in generalisation
Difficulties in developing independence
Difficulties in developing awareness of learning
Strategies to teach children to
problem solve
Best teaching takes account of the learning style
of children with autism
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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 community
Frequent opportunities for feedback and self
reflection
Emphasis on developing awareness of thinking
and learning processes
Emphasis on developing independence
Change and Independence
Key factors
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Structured approaches
Planned, proactive, positive
Person centred, Individualised programmes
Low arousal - Reduction of anxiety through
preparation
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
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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
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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. 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.
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
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Code
good practice.
Curriculum
responsibility of the school
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Carers
role of the parents.
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Child
rights of the child.
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Collaboration
involving other professionals
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Co-ordination
role of the Transition co-ordinator.
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Commitment
Partnership in planning - Transition Action Groups
Code
In England - Education Act. 1993.
‘ The Code of practice’
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major review of Transition planning –
introducing ‘good practice’
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14 plus Annual review - Transition plan
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which will draw together information
plan for the transition to adult life.
Curriculumthe 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.