Asperger syndrome in the early years: issues and challenges

1. Asperger syndrome in the early years: issues and challenges Dr Glenys Jones University of Birmingham

2. 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.

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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?

11. 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?

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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’

19. 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)

20. 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

21. 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

22. 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

23. 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