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.