Asperger syndrome in the early years issues and challenges
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Asperger syndrome in the early years: issues and challenges. Dr Glenys Jones University of Birmingham. Two key comments. ‘ We hold more than half the solution .’ (Carol Gray) ‘ Other people are my biggest problem.’ (Wendy Lawson)

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Asperger syndrome in the early years: issues and challenges

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Asperger syndrome in the early years issues and challenges

Asperger syndrome in the early years: issues and challenges

Dr Glenys Jones

University of Birmingham


Two key comments

Two key comments

  • ‘We hold more than half the solution.’

    (Carol Gray)

    ‘ Other people are my biggest problem.’

    (Wendy Lawson)

    So, we can all help a great deal if we modify our communication; our demands; the physical and sensory environment; take their perspective and respect and value their way of being.


Knowledge practice and provision are improving in relation to

Knowledge, practice and provision are improving in relation to:

  • Diagnostic practice

  • Strategies to support the child and parents, siblings and grandparents

  • Types of advice/training available for parents and staff expanding


Diagnostic practice 1

Diagnostic practice 1

  • Age at diagnosis is getting earlier (average age 11 years, Howlin and Moore, 1997), but still work to be done

  • More people able to recognise AS, as awareness and training develops

  • Methods for identification by key professionals being developed and refined

  • Video and CD/DVD resources available


Diagnostic practice 2

Diagnostic practice 2

  • Local diagnostic teams for ASDs increasing (as recommended in

    National Autism Plan for Children)

  • Greater efforts to include information from all sources and across settings

  • Development of keyworker systems to avoid repetition of work and confusion


Some diagnostic issues remain

Some diagnostic issues remain

  • Child often sees many different professionals (15-20 before the age of 5 years)

  • Conflicting advice on diagnosis and interventions may be given to parents

  • May be limited co-ordination and collaboration across professions


Some diagnostic issues remain1

Some diagnostic issues remain

  • AS is an ‘invisible disability’ – so other explanations may be given for the child’s behaviour - parents and/or the child may still be blamed by the school or other family members PRIOR to diagnosis

  • Some professionals may still hold this view AFTER diagnosis too – often those with little experience of ASDs – training need


Some children with as are not diagnosed early or at all

Some children with AS are not diagnosed early or at all

  • Some children with AS not diagnosed until late primary or secondary age (or adulthood), even when evidence of AS in their early years has been clear

  • There are still many children with AS in mainstream schools without a diagnosis, who would benefit from this

  • However, identification is rising as awareness increases


Issues at and immediately after diagnosis

Issues at and immediately after diagnosis

  • Rarely time to speak to professionals for long enough or without the child

  • May only be the child’s mother who receives information first-hand

  • Advice to parents on how to help, after diagnosis given, may not come soon enough

    (6 weeks recommended target in NAPC)

  • HOWEVER, intervention does not need to WAIT for diagnosis – we can intervene at an earlier stage


Which intervention

Which intervention?

  • There are now lots of interventions and lots of books on AS, how do we choose what to do?

  • ‘Read the child, not the book’ – ie recognise the differences between those with AS and determine what each individual child actually needs?

  • How might these needs be addressed?

  • How will the child react to these strategies?

  • How can we check this out?


Another useful triad

Another useful triad

1what is the child’s view of the intervention?

2what have others done to help his/her understanding of the intervention?

3what means has the child to 'tell' us what s/he has experienced?


Ideas on intervention how can we help

Ideas on intervention: how can we help?

  • Understanding of AS continues to develop

  • Key areas for assessment and intervention continue to be identified. Currently, these include:

    communication; social and emotional understanding; flexibility; sensory perception; motor skills; self esteem; self construct; and leisure activities

  • Ideas on strategies to develop each of these continue to be developed


The hidden difficulties in as

The hidden difficulties in AS

  • Some children are able to ‘pretend’ to be normal, but this is very effortful – and they need time to ‘be themselves’

  • High intellectual ability or high levels of skill in some areas, does not mean that they have high levels of skill in other areas

  • Their abilities may mask their difficulties


The hidden difficulties in as1

The hidden difficulties in AS

  • Good spoken language hides their problems in processing and understanding

  • Self help and independence skills

    (eg dressing; shopping; crossing the road; cooking) are often problematic as these involve rapid information processing; flexible thinking; and social understanding


Areas to assess

Areas to assess

  • Communication – initiated and responses

  • Language – expressive and receptive

  • Social understanding and relationships with children and adults

  • Flexibility

  • Activities when alone

  • Fine and gross motor skills

  • Sensory responses


Which school

Which school?

  • Type of school – m/s; special; specialist; or home tuition

  • Which school? – key variables are staff attitudes to difference; flexibility; their willingness to involve parents; respect for ALL children;knowledge of AS


Almost every social encounter has the potential to create confusion and raise stress levels

Almost every social encounter has the potential to create confusion and raise stress levels

  • Literal understanding

  • Q: ‘Would you like a bag?’

  • A: ‘I don’t know – what colour is it?’

  • Q: Is this the queue?

  • Friendships are hard to understand, initiate and maintain and may be viewed simplistically

  • ‘Is there a Friends R Us store?’

  • Emotional awareness – we need to increase awareness and give the child strategies to deal with feelings


Some strategies to develop social and emotional understanding

Some strategies to develop social and emotional understanding

  • Creating a friendship pair or group

  • Teaching games that children play

  • Creating a Circle of friends

  • Teaching about emotions using real situations and photos and videos

  • Social stories and comic strips

  • Individual ‘counselling’


Forms of advice and training for parents

Forms of advice and training for parents

  • Good practice is that which recognises that

    ‘one size does not fit all’ – need to offer a range of options to families and children

  • Growth in the literature; outreach; support at home; training workshops; Internet; accredited courses

  • BUT these are not yet available to all families

  • Access issues relating to the ability of professionals to ‘reach’ some families (eg language; literacy; social class; financial; transport)


Demands of as on parents

Demands of AS on parents

  • Child may appear to ignore or avoid parents

  • Parents hurt by the social isolation/rejection of their child by other children and parents

  • Some behaviours are very distressing and extremely stressful to live with

  • Not knowing exactly what/when the child might find it all too much – ‘walking on eggshells permanently’

  • Constant support and advocacy needed throughout the day and for life – even when at school – anxious in case there is a problem


Social isolation of the parents

Social isolation of the parents

  • Concerns about safety and difficult experiences in the past can reduce the extent to which families access facilities

  • Many would welcome ‘another pair of hands.’ – and this may be preferable to giving time to an intervention


Recent national guidance and strategies on asds

Recent national guidance and strategies on ASDs

  • Need to provide a good service for ALL geographically – good practice can be trapped in services

  • So, to improve coherence and consistency, there is a need for national guidance


Recent national guidance

Recent national guidance

  • National Autism Plan for Children, 2003

  • DfES Good Practice Guidance, 2002

  • APPGA (All Party Parliamentary Group on Autism)

  • Autism Cymru work to develop an All Wales Strategy for ASDs


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