Assessment of children with Autistic Spectrum Disorder (ASD)
Latest research data indicates that one in 160 Australian children aged between 6 and 12 years have an autism spectrum disorder (ASD), which in the NCHN equates to approximately 500 children 6-12 years old.
ASD is a classified Mental Health disorder with high rates of co-morbidity with anxiety and depression diagnosis as children age and enter adolescence. Effective identification at an early age allows for protective strategies to be implemented to increase child and family resilience to secondary mental health problems.
At present the waiting list for children to be assessed by a psychologist at the Child and Family Health Team in Newcastle is over 12 months. Many of these children are waiting for an assessment of possible autistic spectrum disorder (ASD). There are around 170 children on the list. Delayed diagnosis may result in these children not gaining access to appropriate schooling (eg Autism School) and not receiving optimal early intervention.
The Child and Family Health Team is the referral centre for the Hunter Area but also gets enquiries from more distant centres such as Tamworth, Port Macquarie and Coffs Harbour. The Team is able to provide an outreach service to Muswellbrook but does not have the resources to go further afield.
Services around the network are patchy in availability and quality and there is no systematic information available. Lismore is known to conduct a monthly combined clinic that involves a community paediatrician, psychologist and speech pathologist.
Discussions and negotiations are about to be initiated with the Maitland paediatricians and psychologists to rationalise the children seen in Newcastle and to increase the involvement of the local health workers in assessing older children.
Because of the present waiting list and work load, it is very difficult for the Team to advocate for improved services and the current proposal which involves networking, fact finding to delineate the problem in the Northern Network and identify training and staff needs in other areas, should provide a sound basis for improving the services offered.
The best place of support for preschoolers is via early intervention teams and then school based support. The actual intervention can then be implemented locally in collaboration with the assessment team and local GP/paediatrician.
Another consideration is that parents will be able to access other services, not just health providers if they have a diagnosis, such as:
- appropriate support groups
- apply for Carers Allowance to assist in the cost of the many interventions and aids their children need
- apply for places in appropriate preschools and schools
- University of Newcastle Special Education Unit
- attend information or training sessions provided by places such as Aspect, who deliver excellent sessions on Autism covering such things as how to manage difficult behaviours, how the children learn differently, positive behaviour support, how to establish routines and how to use visual communication strategies
All these interventions can provide profound relief to these families.
The project will have three phases:
- Mapping: Waiting lists of at least 12 months for assessment for Autism in Newcastle have been identified. It has been brought to our attention that services in other areas within the NCHN are inconsistent. There is a need to formally document and map services available in the NCHN and determine where the highest needs are, so that training and services can be directed appropriately.
- The second phase will be to facilitate the training and setting up of multidisciplinary teams to use standard assessment tools (such as ADOS and ADIR) at centres where Paediatricians refer children for diagnosis of ASD. The key is to have a multidisciplinary team of psychologist, speech pathologist and occupational therapist all trained in the assessment tool jointly assess and diagnose the child.
- The third phase will be to help establish linked professional support networks between the teams offering ASD diagnosis. The feasibility will be explored of establishing one or two tertiary level referral services that would provide ongoing training and support, promote data collection and research and be linked in a hub and spoke fashion with more localised services.
Aims and objectives
To increase the expertise and improve the efficiency of NSW Health to provide services for the assessment of children with ASD in the Northern Child Health Network (NCHN). This will ensure that children are assessed expeditiously so they can commence early intervention and improve their long term outcomes.
Expected outcomes
- More efficient assessment of children with ASD throughout the NCHN.
- Increased knowledge of ASD and its diagnosis in the NCHN.
- Increased capacity for assessment and intervention services in regional child and family teams
- Increased access to assessment and intervention services for children with ASD
Key performance indicators
The success of the project will be measured by:
- Evidence of reduced waiting times for assessments.
- Evidence of reduced need to travel to another centre for assessment.
- Evidence of children assessed and enrolled in an early intervention program.
- Increase in regional child and family health teams offering multidisciplanary ASD assessments
Progress
Phase 1 of the project, service-mapping exercise, was undertaken during the last financial year. The mapping exercise highlighted the different health services within Hunter New England and North Coast Area Health Services for children and young people with Autism Spectrum Disorder. A Directory has been developed based on survey results from 23 services within the Northern Child Health Network and will be distributed to survey participants.
Lessons learned
Communicating between different health services and identifying gaps in services at the different sites, different models of service delivery and the different professionals involved in each service makes it difficult to have a uniform approach to service delivery for children and young people with Autism Spectrum Disorder. The project officer found that talking with the different professionals was more beneficial in getting information regarding their service, rather than relying just on the survey being returned. Most of the professionals that were spoken to identified with the increased need to assess and diagnose children and young people with Autism Spectrum Disorder and the lack of public based services available to these children.
Challenges
It was not always easy to locate the most suitable professionals within a service to talk with (particularly DADHC and CAMHS services). Waiting on survey results so that collation could continue and the Directory could be finalised was also a challenge.
For more information contact:
Assoc Professor John Stuart
Paediatrician and Team Leader
02 4924 6179