Background to the Research

• A number of studies have noted parental dissatisfaction with the diagnostic and assessment services available for children with autistic spectrum disorders. These services appear to be less well developed in NI compared with other regions of the UK.
• In light of this a consultative research project was undertaken with parents, professionals working in education, health and social services, representatives from provider Educational boards and HSS Trusts and commissioners of health and social services.
  

Research Approach

• Four focus groups were held with 34 parents who were members of PAPA from throughout NI.
• Written questionnaires were sent to nominated persons in each HSSB; the 5 ELBs and 11 HSS Trusts (replies were received from 15 of the 21 agencies).
• A second written questionnaire was sent to 100 professionals involved in the provision of diagnostic services for people with autistic spectrum disorders.
  

Main Findings

• Many respondents reported that one of the key problems they had experienced was a lack of information about diagnosis and referral routes.
• Parents felt that in many cases professionals seemed reluctant to take responsibility for making a diagnosis, and the comments of professionals echoed this evidence.
• Many professionals reported a lack of exposure to diagnostic techniques during initial training and this was given as one of the main reasons for lack of experience in the diagnosis of complex conditions and symptoms.
• Respondents in each group reported a lack of a coordinated multi-professional approach to diagnosis. Alongside this, parents reported receiving conflicting advice from different professionals.
• Respondents gave unanimous support to the need to invest in appropriately coordinated, child focused, inter-professional diagnostic services.
• The greatest difficulty reported was the overall lack of provision of responsive therapeutic intervention programmes for children. However, parents and professionals reported that excellent care packages have been provided in some areas of the Province.
• Parents and professionals agreed the resultant care plans should be formulated jointly following discussion and negotiation with all key stake holders.
• All respondents emphasised the need for training to enhance competence in the assessment and diagnostic process for both parents and professionals. In particular the training of primary health care staff ( health visitors, General Practioners, nursery and primary teachers etc.) was felt to be crucial in order to assist early detection and referral to services.
• Ninety per cent of respondents supported the need for some form of specialist services in NI for children with Autistic Spectrum Disorder, which should operate alongside the existing range of generic child and family services.

Conclusions

• The study's proposals have to be placed in the wider context of child and family services. In order that skills and expertise can be maximised, a debate is needed as to how specialism can best operate within these wider services.
• The operation of specialist services with generic services for this group of children will necessitate changes in the initial and post-qualifying training of generic and specialist professionals. It will also require a debate concerning the best way to nurture new advances in specialist areas through research and the evaluation of innovative practices at a national and international level.
• An emphasis on assessment and diagnosis must not detract from the ongoing provision of appropriate and effective interventions to ameliorate the disabling effects of these disorders and to support families in their caring role.