STAMPPP Science and the Treatment of Autism: A Multimedia Pack for Parents and Professionals

University of Ulster, UK

Queen’s University, Belfast, UK

University of Applied Sciences, Munster, Germany

University of Oviedo, Spain

Akershus University College, Norway

Parents’ Education as Autism Therapists, Belfast, UK

European Association for Behaviour Analysis

A Case Study:A Case Study:Meet CillianMeet Cillian

At age 4 –Did not respond to hearing tests…possible brain damage, developmental delay, vocabulary of 7-8 words, preferred solitary repetitive play

Diagnosis – Asperger’s Syndrome, ADHD

Professionals who were unable to offer his parents practical advice:

Community Medical OfficersAudiologistsEar, Nose, and Throat (ENT) specialistsSpeech TherapistsEducational PsychologistsClinical PsychologistsPaediatriciansOccupational TherapistPhysiotherapistHealth Visitors

Professionals who were unable to offer his parents practical advice:

Community Medical OfficersAudiologistsEar, Nose, and Throat (ENT) specialistsSpeech TherapistsEducational PsychologistsClinical PsychologistsPaediatriciansOccupational TherapistPhysiotherapistHealth Visitors

‘The first child in N. Ireland to benefit from ABA. Here, in his own words, he welcomes parents and professionals to a conference on ABA held at the University of Ulster in 2005.

It is NOT a therapy for autism

Dillenburger, K., & Keenan, M. (2009). None of the As in ABA stand for autism: Dispelling the myths. Journal of Intellectual & Developmental Disability, 34, 193–195.

Applied Behavior Analysis is the science in which tactics derived from the principles of behavior are applied systematically to improve socially significant behavior and experimentation is used to identify the variables responsible for behavior change. (Cooper, Heron, & Heward, 2007 p. 20)

Supreme Court of British Colombia (2000). “…It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention.”

In support of the Science of Applied Behaviour Analysis (ABA)

Surgeon General of U.S.A. “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in

increasing communication, learning, and appropriate social behavior.”

National Standards Project (2009). The largest number of studies ever reviewed – “The overwhelming majority of these interventions [.i.e., effective interventions]” were developed in the behavioral literature.

Skills deficit in Europe: Red dots indicate approved courses in ABA

Training DVD Training Manual CD-ROM with useful materials including

data collection sheets, toileting charts, etc.

ABC Notebook

Introduction to Autism and the assessment process ABA training

1. Understanding Behaviour

2. Measuring Behaviour

3. Increasing Behaviour and Teaching New Skills

4. Working with Problem Behaviours

5. Implementing a Programme Parent & Professional testimonials

START: Press Releases by Universities…..one picked up by BBC, one picked up by Public Radio and Local T.V. in Spain

International conference presentations as project developedAcademy for Medical and Continuing Professional Development, Munster, GermanyEuropean Association for Behaviour Analysis, Crete7th Inclusive and Supportive Education Congress, Promoting Diversity and Inclusive Practice, Belfast, N. Ireland36th Annual convention of Association for Behavior Analysis International, San AntonioAssociation for Behavior Analysis International, Oslo

1000 copies given out free in each country through workshops and local charities

END: Launch venue was Stormont in Belfast (where the Politicians hang out). Press release and invites to all politicians

A caricature of different perspectives in the autism debate in Ireland

The current state of play

Please supply a list of references from research published in peer-reviewed journal articles showing an eclectic approach to be equal to, or superior to ABA

Admitted they didn’t have any!!

ECLECTIC is the way to go!

Please supply a list of references from research published in peer-reviewed journal articles showing an eclectic approach to be equal to, or superior to ABA

Admitted they didn’t have any!!

Republic€20 Million Fighting parents

Who is misinforming the Ministers for Education?

Who is misinforming the Ministers for Education?

Task Group Report on Autism (2002)

Local professionals who work with young children suggested to Task Group members that they would have grave reservations about being involved in subjecting such young children to such an intense behavioural programme for fear of causing some kind of psychological damage!

How could the Surgeon General be so wrong?

Despite complaints, serious mistakes about ABA not corrected

National Council for Special Education (NCSE), 2009

Executive Summary: However, the studies that have robustly explored the comparative benefits of intensive behavioural interventions with other approaches report, on balance, mixed findings on the superiority of any one approach. These findings, along with the consensus view from the expert strand and policy documents, indicate that a range of interventions (eclectic provision) should continue to be funded and provided for families.

A Parent view -The report is a biased hatchet job on the rationale for the ABA Schools down here, by the usual crack squad in Birmingham. 

Lest you be in any doubt, the NCSE is a front for the Dept of Education and Science (DoES).

National Council for Special Education (NCSE), 2009

Executive Summary: However, the studies that have robustly explored the comparative benefits of intensive behavioural interventions with other approaches report, on balance, mixed findings on the superiority of any one approach. These findings, along with the consensus view from the expert strand and policy documents, indicate that a range of interventions (eclectic provision) should continue to be funded and provided for families.

A Professional view - there are errors of fact in terms of the authors description and definition of applied behaviour analysis and associated interventions. ...The report will also be read by others who will not understand that there are errors within it. Are you not ethically obliged to address these concerns?

National Council for Special Education (NCSE), 2009

Executive Summary: However, the studies that have robustly explored the comparative benefits of intensive behavioural interventions with other approaches report, on balance, mixed findings on the superiority of any one approach. These findings, along with the consensus view from the expert strand and policy documents, indicate that a range of interventions (eclectic provision) should continue to be funded and provided for families.

A Professional view - reviewers did a poor job of reviewing the research literature and acknowledged that they resorted to opinion, often their own.

Ken, Here is some material that may not have reached you

Evidence Based Practice and Autism: A Political Minefield Part 1http://www.youtube.com/watch?v=LFVykFNOGdw

Bill requiring autism insurance coverage signed into lawhttp://www.todaysthv.com/news/local/story.aspx?storyid=147389&catid=2

In terms of discussion on evidence the attached paper brings into focus issues affecting decision making in N. Ireland. The text below is taken from a paper questioning the emphasis on Randomised Control Trials (RCT) in the assessment of ABA.

Sorry Mickey - I'm off fish for Lent - including 'red herrings'. Ken Wednesday, 9 March, 2011

SCIENCE FOR SALE IN A FREE MARKET ECONOMY: BUT AT WHAT PRICE? ABA AND THE TREATMENT OF AUTISM IN EUROPE. Keenan, M., Dillenburger, K., Modarato, P., Röttgers, H-R. (2010). Behavior and Social Issues, 19, 124-141 (2010).

In the United Kingdom too, ABA-based treatments generally are funded onlyif so ordered by a tribunal. Similarly, in Germany and in Italy statutory ABA-basedservices that are free to the end user are virtually non-existent. In mostcases parents still loose their fight for funding home-based early intensivebehavioral intervention programs and end up funding them themselves, e.g.,through remortgaging their homes (Byrne & Byrne, 2005).

Despite a growing awareness of parents that ABA provides the bestpossible outcome for their children, it is important to note that in Europe there isno legislation for behavioral services and there are virtually no ABA-basedservices provided by statutory bodies, neither through the health or social caresector nor through education. This means that parents have to pay for any servicesfor their children out of their own pockets (unless they fight and win tribunals)(Byrne & Byrne, 2005). In this vacuum of statutory service provision, free-marketproponents capitalise on the problems of these families, like so-called ‘ambulancechasers’, usually exhibiting a surprising level of naivety with regard to thedetrimental consequences of their actions for parents, children, and the reputationof ABA.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.” Albert Schweitzer