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

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)

    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:

  • 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

  • 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

  • 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

  • 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 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 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

  • 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?

  • 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

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?

  • 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

  • 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 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

  • 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?

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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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