Networks surrounding families with children having ASD

Background:

The Finnish welfare system has encountered radical changes, for example the central government transfer system was rearranged; the legislation regulating municipalities and the work distribution between basic and specialized services was altered. Economic difficulties have challenged the system to develop. Simultaneously the emphasis towards a client centered approach has aroused. These changes are affecting the supply and availability of all welfare services. Autism spectrum disorders are a relatively new diagnosis, hence the service and support system providing care for autism spectrum disorder is fairly unorganized.

Objectives: The aim was to map out and analyze the experiences of the families with ASD children under 16 yrs of the welfare and support network functioning around the family. The main question is: What is the network like and how is the network functioning according to the family.

Methods: The material consists of 13 narrative interviews and egocentric networks. The families described their experiences with the help of child’s lifeline, placing in the line their encounters with the service and support system in certain area of Finland. The interview was completed with an egocentric network map drawn by the family describing the network surrounding the family at that moment.

Results: Support and service are highly dependent on the family’s own strengths and informal social network, and also on isolated professionals. This makes the system very vulnerable. Problems were experienced for example with delayed diagnosis, lack of expertise and understanding of the complexity of ASD in the local official support system.

Conclusions: The results indicate a need to improve the support system and the work division in the area. The results are being used to create a functioning support and service system that takes into consideration the needs of the child and the family, but also the local resources.