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

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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.

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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

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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

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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

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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

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Some diagnostic issues remain

• AS is an invisible disability so other
  explanations may be given for the childs
  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

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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

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Issues at and immediately after diagnosis

• Rarely time to speak to professionals for long
  enough or without the child
• May only be the childs 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

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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?

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Another useful triad

• 1 what is the childs 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?

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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

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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

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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

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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

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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
  childrenknowledge of AS

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

• Literal understanding
• Q Would you like a bag?
• A I dont 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

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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

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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)

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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

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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

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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

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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