This report was commissioned by the three area health boards of the Eastern Regional Health Authority in order to review the needs of children under eighteen with Asperger Syndrome/ high-functioning autism. This is the first published report of its kind in Ireland.
The report is divided into five chapters, with a timely and interesting discussion on the differential diagnosis of Asperger Syndrome/high-functioning autism by Professor Michael Fitzgerald in Appendix I. Chapter One gives a general overview of Asperger Syndrome, drawing attention to the current debate among professionals about the differentiation between Asperger Syndrome and high functioning autism, the need for more public awareness of the condition in order to enhance early diagnosis, and the need for appropriate educational supports and partnership with parents in order to reduce stress levels.
The current service provision (in the Eastern Region) is discussed in Chapter Two. Beechpark Clinical Services were originally seeing children with autism, but among their current caseload of 340 clients, 41 are at the higher end of the spectrum. The model that has been adopted is for an outreach multidisciplinary team to work with families and children at home, in preschools, in primary and secondary schools, and to include consultation and follow-up with other agencies. Four clinical teams are to be involved. The ERHA report suffered from serious time constraints, but it would have been interesting to have more detail on the kinds of approaches to be used with children with Asperger Syndrome.
In Chapter Three, while acknowledging the significant coping difficulties of the children—in social comprehension, vulnerability to bullying, early drop-out rates from school, etc., the report states that ‘inclusion in mainstream education is a must if the social skills deficit is to be addressed.’Following a brief outline of the benefits and challenges of mainstream education for children with autism, readers are introduced to the concept of reversed integration (‘the provision of peer interactions where the child remains in the special class and mainstream children visit for structured activities’).
The section on communication describes the specific pragmatic language difficulties which children with Asperger Syndrome and high-functioning autism present, rather than general delay or the more pervasive communication impairments associated with the less able children on the autistic spectrum. Social skills groups involving the input of parents, teachers and other therapists, group intervention and a partnership model involving collaboration of all those in the child’s life are seen as essential in assessing, planning, implementing and monitoring educational and communication programmes.
Referring to the 50% dropout rate from school by age 13 (p.23), The Southside Partnership Project was set up in 1998 to provide support for all students with special needs including those with AS/HFA. The main needs highlighted are recognition of the condition by teachers and the community in which the child interacts; the need to address the child’s problems not only in school but also at home and in play and leisure times; freedom from bullying and the assistance of multi-disciplinary personnel in developing individual educational plans.
The most expressive part of the report is in Chapter Four which outlines the views of parents and of professionals in the psychiatric service. With the average length of time for diagnosis being 4.0 years, and 65% of the children in mainstream school without support, the following recommendations were made:
- The establishment of a core group of professionals who are specialists in Autistic Spectrum Disorder;
- A comprehensive diagnostic and assessment service to work in partnership with parents;
- A professional support service to be available to mainstream schools;
- Training for classroom assistants;
- Intensive early education programmes;
- More educational psychologists;
- Researched, successful therapies to be made available.
For professionals, lack of coordination was an issue, and the notion of integrating neurodevelopmental, child mental health, paediatric, and learning disability teams with autistic services was put forward as an option.
Many of the professionals surveyed reiterated the parents’ concerns with regard to the need for appropriate education with multidisciplinary inputs.
Overall, recommendations in the report underlined:
- The need to regard to Asperger Syndrome as a condition in itself warranting special attention.
- Early referral and diagnosis with an agreed diagnostic formula.
- Special training to be promoted within all the relevant professions.
- Partnership between parents and professionals.
- Each child to have a comprehensive treatment plan formulated and delivered to them.
- Each child to have an educational plan from pre-school to third level.
- All programmes to be critically evaluated.
As a number of models have already been in use in the Dublin region over the past couple of years, outcome studies should be forthcoming in the near future.
In summary, this report should be read by all professionals and service planners both in the Departments of Education and Science and Health and Children in other parts of the country and hopefully can be used as a blueprint to build on.