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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
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
           Other changes and transitions
Life is a rollercoaster – a baffling and incomprehensible world

       disruption of routines
       sensory transitions
       At school:
                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
                 Life changes

Adolescence- physical, psychological and social changes
School holidays
Moving house
A new sibling
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

  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

   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
 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
                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,
  Always 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
    A new sibling
    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
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
   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
   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
             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

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

– 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

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
    Problem solving and decision making
  Difficulties with problem solving………..

               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
May have difficulties in ‘switching’ attention

May have difficulties in ‘integrating’ stimuli from different

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
Difficulties in coping with change and transition due

  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

–   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
Emphasis on developing awareness of thinking
and learning processes
Emphasis 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
–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
   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. 1999
Transitioning: Making the Move Towards Inclusion. Maureen Bennie. Autism today.
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.

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
        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.
                           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
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

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.

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