A ground-breaking new study has been launched understand how to support families affected by autism as soon as they receive their diagnosis.
The trial funded by autism research charity Autistica, will test whether offering the Incredible Years parent supporting programme to families very soon after their child is diagnosed can result in long-term benefits.
Incredible Years programmes are already widely adopted by schools, playgroups and by parents both across Wales and internationally. By developing young children's social and emotional understanding, the Incredible Years programmes ensure that the children are ready to gain maximum benefit from their playgroup, school or home environment.
A new adaptation specifically to support parents of young children with autism or language delay has been developed. Following a small trial in Gwynedd, the first to be run outside the United States, this new, larger trial is to be run across Wales, to test how effective the programme is in a Welsh setting and review its cost-effectiveness over time.
If trials are successful, a new programme to support parents of young children with autism could be available in Wales and across the UK.
As Prof Judy Hutchings, from Bangor University, who will be leading the research explains:
"Children with Autistic Spectrum Disorder (ASD) often have associated difficulties including hyperactivity, anxiety, hypersensitivity to sounds and materials, sleeping difficulties, and difficulty in understanding and managing their emotions. Parenting children with autism presents its own challenges however the behavioural challenges indirectly rising from autism can cause the caregiver more distress and mental health problems than the core direct challenges of ASD.
As well as contributing to smoother parenting and therefore less stress for both parent and child, improved parenting skills for parents of young children with ASD is vital because of the importance of the early years for child development."
Prof Hutchings of the University's Centre for Evidence Based Early Intervention (CEBEI), at the School of Psychology has been instrumental in both introducing and testing the effectiveness of Incredible Year and her own parenting programmes in Wales, including publication of her "Little Parent Handbook."
The research will begin working with parents in the next few months, 72 families will be involved. One group will receive the programme first and their outcomes will be compared to a control group who will receive the support at a later date.
The parents involved in the earlier pilot found the experience very valuable, not only because they felt less isolated and could share experiences with parents in a similar situation, but also because they learned more about autism and new ways of interacting with, and engaging the attention of, their children.
Claire Golding, a parent from Cricieth who attended the pilot course, said:
"The course helped me adapt my parenting skills to meet my child's individual needs, this had a positive impact on us as a whole family."
"I would recommend the course to every parent who has a child on the autistic spectrum."
Jon Spiers, Autistica's CEO, said:
"Communication and early intervention are one of the autism community's greatest priorities for research, so we're delighted to be funding a cutting-edge project that helps families at one of the toughest times in their autism journey.
This project is incredibly valuable on two fronts: as a research project, it will inform future therapies, but it also has the added benefit of helping a number of families right now. We look forward to seeing the results, and if it is successful, campaigning for this service to be rolled out nationally so everyone in need can benefit."
Professor Richard Hastings, Centre for Educational Development Appraisal & Research (CEDAR), at the University of Warwick, who is also involved in the research said:
"The focus of our research is to improve outcomes in various dimensions of quality of life for children and adults with autism and their families and carers and so we're very interested to see whether this programme will provide a cost effective solution to help these young families."
Dr Sue Evans, Consultant Child Psychologist, at Powys Teaching Health Board, said:
"We are delighted to be involved in this research. We have a strong multi-agency Incredible Years (IY) strategy in Powys and the new IY Autism programme for parents integrates well with this, adding a post diagnostic support pathway for parents of young children with autism. So far we have run two successful pilot groups. We look forward to partnering in the research; running further groups for parents to contribute to evidence about the effectiveness of the programme."
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