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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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

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

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

3 what 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