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

1. STAMPPPScience 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

2. A Case Study: Meet 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 Officers Audiologists Ear, Nose, and Throat (ENT) specialists Speech Therapists Educational Psychologists Clinical Psychologists Paediatricians Occupational Therapist Physiotherapist Health 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.

3. ABA is a Science 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)

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

5. Skills deficit in Europe: Reddots indicate approved courses in ABA

6. “Simple Steps” • Training DVD • Training Manual • CD-ROM with useful materials including data collection sheets, toileting charts, etc. • ABC Notebook DVD Contents • Introduction to Autism and the assessment process • ABA training • Understanding Behaviour • Measuring Behaviour • Increasing Behaviour and Teaching New Skills • Working with Problem Behaviours • Implementing a Programme • Parent & Professional testimonials

7. Dissemination 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 developed Academy for Medical and Continuing Professional Development, Munster, Germany European Association for Behaviour Analysis, Crete 7th Inclusive and Supportive Education Congress, Promoting Diversity and Inclusive Practice, Belfast, N. Ireland 36th Annual convention of Association for Behavior Analysis International, San Antonio Association 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

8. Obstacles and their consequences

9. The current state of play A caricature of different perspectives in the autism debate in Ireland

10. Never mind the science, we’ll do it our way! 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!

11. Never mind the science, we’ll do it our way! 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

12. Never mind the science, we’ll do it our way! Who is misinforming the Ministers for Education?

13. Never mind the science, we’ll do it our way! 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

16. Never mind the science, we’ll do it our way! 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).

17. Never mind the science, we’ll do it our way! 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?

18. Never mind the science, we’ll do it our way! 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.

19. The Lord Maginnis of DrumglassChair of reference group to represent the views of parents, carers, service users and voluntary organisations on the Regional Autistic Spectrum Disorder Network 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'. KenWednesday, 9 March, 2011

20. Science for Sale 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 only if so ordered by a tribunal. Similarly, in Germany and in Italy statutory ABA-based services that are free to the end user are virtually non-existent. In most cases parents still loose their fight for funding home-based early intensive behavioral 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 best possible outcome for their children, it is important to note that in Europe there is no legislation for behavioral services and there are virtually no ABA-based services provided by statutory bodies, neither through the health or social care sector nor through education. This means that parents have to pay for any services for their children out of their own pockets (unless they fight and win tribunals) (Byrne & Byrne, 2005). In this vacuum of statutory service provision, free-market proponents capitalise on the problems of these families, like so-called ‘ambulance chasers’, usually exhibiting a surprising level of naivety with regard to the detrimental consequences of their actions for parents, children, and the reputation of ABA.

22. “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