Background to the Research

• A growing number of children are being diagnosed with ASD. In many instances this is apparent before two years of age. Yet families often receive little advice or assistance until their child is much older.
• The Keyhole project aimed to design, develop and implement an holistic approach to interventions with families who had preschool children aged between 2 and 4 years.
• This included a home-based teaching service; training courses for staff in mainstream playgroups and preschools, and support groups for parents.
• The goal was to develop approaches of proven effectiveness that could be adopted by statutory and non-statutory services in NI and elsewhere. New teaching resources for use with children, families and pre-school personnel have been produced.
• The project was funded by the Department of Health, Social Services and Public Safety (NI) through a grant to PAPA (the main NI Autism charity). The University of Ulster facilitated the evaluation of the project.
• This report describes the work undertaken by the project and summarises the main findings of the evaluation. Key recommendations for future action are identified as well.
  

Research Approach

The University of Ulster undertook a number of studies as part of the evaluation of the Keyhole Early Intervention Project. These included:

• Family interviews (home based interviews with 72 families with a child under 5 years who had a diagnosis of autism.
• Home Visiting Service - 20 families completed a home-based intervention programme consisting of 15-18 sessions.
• Evaluation of the Intervention - the impact of the intervention on children and parents was assessed through measures taken pre- and post the intervention along with comparison to a contrast group of 12 children and families who did not have the intervention.
• Survey of preschools - A survey of 56 staff working in 38 pre-schools of various types in the Greater Belfast area was undertaken to identify their experiences of having a child with autism in the group, the supports they have received or would like to have and their reactions to the future enrolment of children with autism.
• Training of preschool Personnel - a five session training course was developed and delivered in association with the NIPPA.
• A survey of PAPA branch members - 68 members drawn form 13 PAPA branches throughout NI gave there views in self-completion questionnaires on the ways PAPA have helped them and the ways in which they feel they could be better supported.
• Parent Support groups - two groups consisting of 15 mothers met on four occasions with an experienced facilitator.
• Development of Training Resources: A guide was prepared to assist personnel offering home-based interventions along with booklets that can be used with parents and children.
  

Main Findings

The needs of children and families

The survey undertaken with 72 families who had a child under five years of age found:

• Boys greatly outnumber girls in a ratio of 9:1. Families come from all sections of the community.
• Preschool children with a diagnosis of autism show a wide variation in their development; some function close to their age peers whereas others have marked delays.
• The most commonly reported problems by parents are their child's language delay, relating to other people, play, unusual behaviours, and adapting to change. Most parents feel they lack the skills to deal with these problems.
• The problems were usually evident by the time the children were two years of age.
• Although families see a range of professionals, they feel improvements are needed to education, health and social services.
• The children attend a range of preschool facilities and most take part in normal family activities outside of the home.

Impact of home-based interventions

The evaluation of the intervention found that:

• All the families felt they had learnt new things from the intervention and they were broadly satisfied with it. Nearly all would recommend it to other parents.
• After the intervention, parent's reported fewer problems with their child and an increase in the number of problems that were now 'getting better'. This was particularly so with problems in language and play.
• The children made greater progress on the communication and socialisation domains of the Vineland Scale with no significant change in motor or daily living skills. Hence the effects of the programme were specific to the domains targeted.
• Independent assessors of the children rated significant improvements across various psycho-educational domains.
• Parents appear to be more aware of their child's difficulties as a result of the intervention.
• This evaluation did not address the issue as to whether or not the approach used in this intervention is more effective than other approaches such as Applied Behaviour Analysis.

Pre-schools

The following findings were drawn from the survey of preschool facilities and staff along with the evaluation of the training course:

• Although the staff and preschool facilities in this study were probably biased towards enrolling children with ASD, nearly all reported having few training opportunities and most felt inadequately skilled to meet the particular needs of the these children.
• Staff in preschools encounter broadly the same range of problems as do parents, and they find behaviour and communication difficulties the hardest to cope with.
• A specially developed training course was well received by the participants who, three months later, had implemented much of the advice given on the course.
• Course participants appeared more willing to enrol children with ASD in their groups although a minority did express some reservations.
• A resource pack for tutors has been prepared so that similar courses can be delivered elsewhere in the future.

Parent Support Groups

• Parents who have children with ASD value the opportunity to meet with and to learn from other parents. This is more true for mothers than for fathers.
• A range of approaches are possible but the value of a small group of parents coming together to focus on a particular issue with a knowledgeable facilitator is the most common.
• Group work seems to provide mothers with encouragement, emotional support and information.
• Nonetheless, the number of mothers availing of invitations to join groups is low which may reflect changes in parental working patterns and the difficulty in finding a suitable time and a venue that is convenient.

Recommendations

This section of the research report was aimed primarily at service commissioners and providers in education and health and social services. Underpinning all the specific recommendations made was one over-arching one, namely an integration of preschool services provided to families by Health and Social Services Trusts and Education and Library Boards. In all, 22 specific recommendations were made with the intention to produce the following outcomes:

• The severity of a child's disabilities will be ameliorated through early identification and intervention. Thus, the thrust of these recommendations is towards preventative action.
• Families will feel more supported and better able to cope with their child. Fewer demands may be placed on high-cost, out-of-home provision.
• The knowledge and skills of staff in both mainstream and specialist services will be increased and they will provide a higher quality of service in line with parental aspirations.
• Services will be more child and family focused with present administrative systems reformed to be 'fit for purpose'.
• The report also recommended that future service developments should be monitored and evaluated against these outcomes.