Report slates service provision for children with autism

A hard-hitting report on the lack of statutory services for children with autism and their parents and carers will be published this week.

The report, Meeting the Needs of Families Living with Children Diagnosed with Autism Spectrum Disorder, was compiled by researchers from Queen's University Belfast, University of Ulster, and autism charity, PEAT, supported by funding from the Royal Irish Academy.

A total of 95 parents, representing 100 children with Autism Spectrum Disorder (ASD) and 67 multi-disciplinary professionals took part in the research which covered both Northern Ireland and the Republic of Ireland.

The report concluded that there is a severe lack of statutory service provision, in particular in Northern Ireland. Amongst the recommendations of the report are:

• Quicker diagnosis of children with ASD;
• Better training for staff involved in making diagnosis;
• Early intervention and regular revision of children's education and care plans;
• That the cost benefits of early intervention are taken into account;
• More support for Applied Behaviour Analysis training and education and better parent/professional partnerships.

Dr Karola Dillenburger from the School of Sociology, Social Policy and Social Work at Queen's said: "Nearly 3000 school-age children in Northern Ireland have Autism, and it is thought that more than 300 children born every year will later be diagnosed with the condition. The lack of evidence-based treatment for these children is unacceptable.

"As part of my work with Queen's, I recently visited Brock University in Ontario, Canada as Invited Scholar and presented this report to the Ontario Association of Developmental Disability Research Group. The people I spoke to were astonished at the lack of support for Applied Behavioural Analysis (ABA) in Ireland. Ontario was in a similar situation ten years ago but, based on extensive cost-benefit analyses and evidence of effectiveness, has now turned this around by making Intensive Behavioural Interventions based on ABA available to every child diagnosed with Autism Spectrum Disorder. Brock University is offering training that is accredited by the Behavior Analysis Certification Board to professionals who work with these children.

"By analysing a child's behaviour and tailoring intervention treatments to their own specific needs, ABA can help break down the barriers that isolate Autistic children from the rest of the world and allow them reach their full potential."

Dr Mickey Keenan, from the University of Ulster's School of Psychology said: "There are deficiencies in the formation of parent/professional partnerships; prolonged waiting times for diagnosis and the issuing of Special Educational Needs Statements and the absence of a coherent view on science-based policy and practice.

"While parents and professionals largely agreed about future needs, there were some discrepancies with regard to the basis of interventions. The research uncovered considerable lack of knowledge and application of the science of behaviour analysis amongst professionals that can be directly linked to the non-inclusion of suitably qualified behaviour analysts in local governmental reviews and reports."

Dr Tony Byrne, chairperson of PEAT and one of the researchers, as well as the father of two children with ASD, said: "While this report may make uncomfortable reading for some, it is necessary to show those in positions of power that current services are neither adequate nor effective.

"The research has allowed PEAT to identify our priorities to help families and to develop a strategy for the next five years. Effective training for parents and carers can help to make a real difference for their kids, but they need the full support of health and education professionals in their struggle with autism".