Queen’s University autism expert calls for improved services and support for people with autism
A world-leading autism expert is calling on the Northern Ireland government to take action to improve the support and services available to people with autism and their families, in line with international standards.
Professor Karola Dillenburger from, Queen’s School of Education, is the author of a new report on autism in Northern Ireland, funded by the Office of the First Minister and Deputy First Minister (OFMDFM).
Around 200 children every month are referred for an autism diagnosis in Northern Ireland, but more than 2,000 children are currently awaiting a diagnosis. Professor Dillenburger says these children and their families face a higher risk of poverty and inequality.
The report, entitled ‘Helping the most vulnerable out of the poverty trap and reducing inequality’ is an examination of the impact of autism in Northern Ireland and includes key recommendations for the transformation of existing autism policy and practice.
Key findings are as follows:
- Department of Health Social Services and Public Safety figures state that just over two per cent of school children in Northern Ireland have autism, but survey data suggest the actual figure may be higher. Adult autism rates are unknown.
- 51 per cent of people report knowing someone with autism. Autism awareness in Northern Ireland is high. Knowledge about autism is good and attitudes towards people with autism are positive.
- The cost of autism across a single lifetime is estimated at £0.9-1.5 million. In the UK, the total cost per year is estimated at £34 billion. Most of this is due to lifetime care costs and unemployment of individuals with autism and their families.
- The cost of bringing up a child with autism is estimated to be six times greater than for other children.
- Early intervention that is based on Applied Behaviour Analysis is recognised internationally as best practice and can enhance the quality of life of people with autism and save up to £1 million across their lifetime.
- These kinds of early intensive Applied Behaviour Analysis-based interventions are not available in the statutory sector in Northern Ireland.
- What passes as ‘early intervention’ in Northern Ireland is brief and variable. In many cases, it constitutes a one-off awareness raising visit to families.
- Staff training for those who provide support and services for those with autism is very basic. Professional autism training at local universities is under-utilised.
- Unemployment in families directly affected by autism is up to 20 per cent higher than in other families. Many parents give up work to care for their children.
- Children with autism miss school 8-13 days per year more than other children, while 20 per cent are bullied 20 per cent are frequently excluded (for example, excluded from certain activities or being asked to stay at home when there are school trips).
The report makes a series of recommendations that would have a significant impact on individuals and families affected by autism, including improved staff training, early diagnosis and interventions for children with autism, improved training and employment for adults with autism, and additional support for families.
Early diagnosis and intervention vital
Professor Dillenburger, Director for the Centre for Behaviour Analysis at Queen’s, said: “The evidence suggests that at the moment the scales are tipped firmly against individuals with autism towards poverty rather than equality and inclusion. The key to rebalancing the scales lies in early diagnosis and early intensive behavioural intervention for children with autism, and improved training for those who work in education and health services.
“There is extensive and unequivocal evidence that early intensive interventions, based on Applied Behaviour Analysis (ABA), can enhance the quality of life of individuals with autism and their families and result in significant cost savings. The time taken to refer children and from referral to diagnosis means that these children are not being reached early enough, when brain plasticity is greatest and interventions are likely to have the greatest impact. Without this the outlook is bleak.
“While the Minister for Health has promised £2 million to reduce diagnostic waiting lists, none of this funding has been allocated to the early behaviour analytic interventions that are so vital in the early days following a diagnosis.”
Professor Dillenburger is a globally renowned expert in autism and Applied Behaviour Analysis. She recently gave evidence to a Parliamentary Hearing in the Czech Republic on the evidence for Applied Behaviour Analysis and has since agreed to work in partnership with Masaryk University in Brno to develop the Czech Republic’s first professional course in Applied Behaviour Analysis. Professor Dillenburger developed similar courses at Queen’s.
Speaking about professional training for those who work in autism support services in Northern Ireland, Professor Dillenburger said: “Without well trained staff, Departments cannot fulfil their role in reducing poverty and inequality for people with autism.
“Northern Ireland’s universities have a wealth of expertise in ASD and autism interventions, with Queen’s offering two distinct Masters degrees that are relevant, the MSc in Autism Spectrum Disorder and the MSc in Applied Behaviour Analysis, that is delivered in an online/blended format. We also offer relevant undergraduate training through our Open Learning Programme.
“Unfortunately, these courses were omitted from the Northern Ireland Autism Strategy. So while we are in a positon to provide much-needed training for those who work with families affected by autism that is sought after internationally, locally our expertise remains an untapped resource.”
The report ‘Helping the most vulnerable out of the poverty trap and reducing inequality’ is available online at http://pure.qub.ac.uk/portal/files/23832147/BASE_Vol.5._Final_report.pdf