Launch of Study "Is Anyone Listening?"
The launch was attended by parents, professionals as well as local MLAs and Councillors. The research produced startling evidence of how parents of a child with Autism experience a continuum of stress with over 90% of parents experiencing significant anxiety and 57% reporting acute anxiety and panic states. Nearly 65% of those parents interviewed reported illness linked to caring for a loved one with Autism, with over 50% of mothers currently taking medication as a way of coping with their stress levels.
Following on from Autism NI’s earlier study, ‘The Hidden Community’ which outlined an effective family support model, Autism NI commissioned independent psychotherapist and trauma specialist Dr Rosie Burrows to document the response of parents who have a child/individual on the Autism spectrum in Northern Ireland.
Dr Burrows explains, “A clear message from the research is that parents and their children/individuals on the Autism spectrum are paying too high a price and I ask, 'Is anyone listening?' This price includes physical ill health, worry about the future for their child, emotional and financial problems, as well as social exclusion. Is it acceptable that individuals and families experience a profound lack of awareness, marginalisation and discrimination resulting in a continuum of physical and emotional health problems and social isolation?
As one parent told me, 'What do you have to do to be heard? Jump in the canal?' Therefore it is crucial that this unique piece of research is acknowledged and the exhausting efforts parents currently have to go to in order to access support are fully recognised.”
Findings within this report also confirm that professionals are also deeply impacted by the work they do with families who have a child with ASD. It was noted that working within the field of Autism and the challenges which they come up against, can have a very negative effect on their own quality of life. The research found that professionals are often caught between the expectations and needs of parents who have a child with Autism, and an inflexible state system.
The research involved 141 parents of over 300 children/individuals with ASD, 59 professionals and two adults diagnosed with ASD. Methods used included focus groups, family and individual interviews, a questionnaire and a theoretical discussion of the findings. You can find the study on the website www.autismni.org or by clicking http://www.autismni.org/11212%20Autism%20NI%20Report%20sm.pdf
Many thanks to parent Catherine Boyle who spoke so eloquently about being a parent and her experience to date. It was truly a very captivating and moving speech. Also thanks go to Lesley Waugh the ASD Coordinator from the SHSCT who provided a real insight to the issues that professionals face on a day to day basis.