Asperger syndrome in the early years:

issues and challengesDr 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

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?

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