Researching parents experiences of the ASD diagnostic process in County Mayo

This study, which was funded by the National Disability Authority (NDA) Research Promotion Scheme in 2006, was undertaken by a group of speech and language therapists working in Primary, Community and Continuing Care, HSE (Health Service Executive) in Co Mayo. The aims were to extend a study undertaken previously which examined professionals views of the local diagnostic service for Autism Spectrum Disorder (ASD). The present study elicited parents views of the service. Recent studies on this topic were consulted as were documents on autism produced in Ireland over the last ten years. Criterion sampling was employed and the data generated was analysed using a mix of grounded theory, thematic content analysis and framework analysis.
\nA focus group was followed by semi structured individual interviews which were later transcribed and analysed by a research assistant. The questions in the focus group were selected based on our previous study and the literature review. The questions used in the semi structured interviews were based on the analysis of the focus group data. The same questions were used in each individual interview.
\nFour main themes emerged. These were
\n
\nDiagnostic Process
\n
\nDay of Diagnosis
\n
\nSuggestions for improvements to services
\n
\nSatisfaction with Service
\nSeveral sub-themes within each main theme were identified and examined.
\nThe time taken to diagnose autism spectrum disorder (ASD) for our participants ranged from 4 months to two and a half years. The average age at time of diagnosis was three years seven months. 80% of our participants were satisfied with the diagnostic process; these results compare favourably with recent studies in UK and Canada. They are due in part to local initiatives in Co Mayo, including being diagnosed at Primary Care level rather than a secondary or tertiary level, the availability of an expert panel to discuss diagnosis of complex cases, being prioritised by the professionals, accurate diagnoses and joint working.
\n4
\nThere was some dissatisfaction also with the service and reasons cited include location of disclosure interview, lack of information received, lack of support following the diagnosis, the perceived disjointed nature of services resulting in delays and criticism of the autism forum.
\nSuggestions from parents included a Public Health Nurse (PHN) and general Practitioner GP screening service, more Speech and Language Therapists (SLT) and Psychologists, Applied Behaviour Analysis (ABA) schools, support including counselling, more sharing of information and being given the diagnosis in their own homes.
\nRECOMMENDATIONS
\nWe would support the recommendation by parents that screening for ASD should occur at developmental check ups. This would involve training of Public Health Nurses and GPs in recognising symptoms of this complex condition and using screening checklists.
\nWe would further recommend the following:
\n1.
\nInformation packs on Autism Spectrum Disorder (ASD), including local support networks should be collated and made available to professionals involved in the diagnosis of Autism Spectrum Disorder, to give to parents at the disclosure interview.
\n2.
\nBest practice guidelines for informing parents of their child’s disability, as being prepared by the National Federation of Voluntary Bodies, should be drafted and adopted in the region.
\n3.
\nParents should be kept informed and involved at every level of the process.
\n4.
\nSupport services need to be developed for parents following diagnosis, including the availability of counselling.
\n5.
\nThe delay in accessing intervention services should be eliminated by the Primary Care service continuing to provide a service to the child until the intervention service by the Voluntary Organisation begins and time frames for provision of these services be adhered to.

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