Helping parents to understand their children with autism and to effectively manage their behaviour will have significant benefits regarding social inclusion, quality of life, educational achievement, employment and equality of opportunity.
As such, this project will contribute to the development of a more equitable and socially inclusive Europe in both the short, medium and long terms.
Context of project
Autism is a lifelong condition which affects about 1% of the population (or approximately 7.5m European citizens) as well as those who live with them and care for them.
The presence of autism can be extremely challenging to parents and other family members, and autism has been identified as causing greater family and parental stress than any other disability. The condition can challenge traditional parenting styles and cause parents to feel deskilled and disempowered. The presence of autism within the family can negatively affect the educational achievement, employment opportunities and social inclusion of mothers, fathers, siblings and the individuals with autism themselves.
Teaching parents to understand the condition, and to work effectively with schools and other professionals, has been shown to be effective in improving outcomes for individuals with autism and their families. However, though such parent education programmes have been developed in e.g. Western Europe and the USA, there is little or no availability of such programmes or materials in many areas within Europe, for example in the Balkan/Eastern Mediterranean region.
In order to address this inequity, a strategic partnership has been developed involving universities, non-governmental organisations and the parents of children with autism to:
- develop an evidence-based model for delivering parent education in autism that can be used across Europe
- develop a core curriculum and ecologically valid parent education training materials
- use these materials to provide parent education to families living with autism in areas where it has been previously unavailable. A minimum of 18 training events – six per country – will take place during the lifetime of the project
- evaluate the effectiveness of the materials and the impact of the training using quantitative and qualitative data collection and analysis
- share the model curriculum, tools and materials with stakeholders and make recommendations to policy- and decision-makers.
Parent Autism Education Programme Curriculum
This is the overall parent education curriculum which will form the basis of the parent education programme. It will contain a universally appropriate and relevant core content, whilst being differentiated to be appropriate within different national/cultural contexts.
Parent Autism Education Training Materials
These are the training materials that will be differentiated according to setting and delivered to the families attending the courses.
Parent Education Model and Policy Recommendations
This is the overall evidence-based model for parent education. This document regarding parent education in autism is prepared for policy- and decision-makers and will make a number of recommendations for policy and practice across Europe. It will be produced as a document, with an accompanying YouTube video. It will be launched at the final multiplier event in Cyprus in April 2018.
Eighteen parent training events will be held over the lifetime of the project, six each in Croatia, Cyprus and the FYR of Macedonia. Local trainers will be supported by experienced experts to develop their skills so that the training programmes can become self-sufficient and continue beyond the lifetime of the project.
Four parent/professional conferences will be held – in Croatia, Cyprus, the FYR of Macedonia and the United Kingdom – to share the teaching materials with and obtain feedback from wider groups of parents and professionals, as well as providing learning opportunities.
The partners in the project will also present at national and international conferences (e.g. Autism-Europe International Congress, 2016) as well as producing academic reports and academic articles.
The final evidence-based model, curriculum and learning materials will be made available via the Erasmus+ dissemination platform, as well as via the individual partners and project website.
ESIPP Advisory Group
An advisory group has been recruited to support the work of the ESIPP team
The group comprises:
- Monique Post: a self-advocate on the autism spectrum from the Netherlands
- Claude Schmit: president of Fondation Autisme Luxembourg, and parent of an adult on the autism spectrum
- Dr Martine Delfos: a specialist from Utrecht who has advised regarding autism in Bosnia-Herzegovina and Ecuador
- Friedrich Nolte: an autism specialist with many years experience who works for Autismus Deutschland
- Philip Whitaker: a specialist educational psychologist from the United Kingdom, with many years’ experience of working with children with autism and their families
The Advisory Group acts as a ‘critical friend’ to the project, contributing suggestions with regard to the content and delivery of the parent education programme and the project as a whole.