Bring ABA to the Community: Lessons from Ireland

1. Bring ABA to the Community: Lessons from Ireland Mickey Keenan University of Ulster Rotterdam, 2012

2. How do you help parents who have been denied access to an effective science for dealing with autism? What science are you talking about? How does it help parents? In what way are parents denied access to it?

3. “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.” New York State Department of Health Government agencies supporting the use of ABA-based procedures Surgeon General of the United States Maine Administrators of Services for Children with Disabilities ABA-based procedures are highly effective U.S. Dept. of Defense Comments on the effectiveness of Applied Behaviour Analysis (ABA) for helping children with autism American Association on Intellectual and Developmental Disabilities “highly recommended” (highest rating) National Institute of Mental Health The National Academies Press Association for Science in Autism Treatment Autism Speaks Organization For Autism Research Current Opinion in Psychiatry “Interventions based on applied behavior analysis have the strongest empirical basis, although there is some evidence that other therapies have promise.” (Sturmey, 2002) Pediatrics “The most efficacious psychosocial treatment for autism is applied behavior analysis...” (Lilienfeld, 2005) Supreme Court of British Colombia (2000) “…It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention.”

4. National Standards Project – 2009(http://www.nationalautismcenter.org/) The overwhelming majority of interventions were developed in the behavioural literature.

5. Government officials ABA in Ireland: A parent’s perspective Parents

6. Professionals who were unable to offer practical advice to Cillian’s parents Cillian’s Story age 3 yrs 10 mths • Did not respond to hearing tests … • … hearing loss, possible brain damage, • and developmental delay Community Medical Officers Audiologists ENT specialists Speech Therapists Educational Psychologists Clinical Psychologists Paediatricians Occupational Therapist Physiotherapist Health Visitors

7. Cillian’s diagnosis Cillian’s Story age 3 yrs 10 mths • ... vocabulary of about seven or eight words • ... preferred solitary repetitive play • ... did not respond to his name, he slept little • … Moderate learning difficulties • … Asperger’s Syndrome • … Attention Deficit/Hyperactivity Disorder

8. Age 3 Cillian’s Story age 11 yrs

9. Age 3 Age 11 Cillian’s Story age 13 yrs Cillian, 2005 Welcome address to an ABA conference with a script he wrote himself!

10. Age 3 Age 11 Cillian’s Story age 13 yrs Cillian, 2005 A remarkable transformation by any standards • Skills deficit in community to achieve what Cillian’s mum and I achieved together • (Local ABA Charity, P.E.A.T., has one professional and 250+ parents) • Misinformation on Applied Behaviour Analysis • Abuse of parents by some professionals who charge extortionate fees for their services

11. ABA is a SCIENCE It is NOT a commercial product or 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)

12. Person-Centered and Holistic perspective: Evidence-based practice

13. Person-Centered and Holistic perspective: Evidence-based practice

14. Person-Centered and Holistic perspective: Evidence-based practice

15. Person-Centered and Holistic perspective: Evidence-based practice

16. Person-Centered and Holistic perspective: Evidence-based practice

17. 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!! Yet, they say ECLECTIC is the way to go The Republic of Ireland was asked the same question Same Answer Same Policy

18. Category Mistake: Indicative of lack of understanding of basic issues

19. Category Mistakes Chemistry is the science of matter, especially its properties, structure, composition, behavior, reactions, interactions and the changes it undergoes. Science of Matter Chemistry properties structure composition behavior reactions, interactions, changes

20. Category Mistakes Chemistry is the science of matter, especially its properties, structure, composition, behavior, reactions, interactions and the changes it undergoes. Science of Matter Science of Behaviour Application of a Science of Behaviour ABA PECS DTT NET PT VB Lovaas TEACCH Chemistry properties structure composition behavior reactions, interactions, changes ABA Stimulus control schedules shaping ……. ……. …… ……. ABA is the applied branch of the science of behaviour analysis incorporating an understanding of basic principles like Stimulus Control, Schedules, Shaping, …. Chemistry Manualised applications of the science of behaviour in the area of autism include PECS, DTT, NET, PT, VB, Lovaas, TEACCH.

21. This slide shows the level of antagonism towards ABA by professionals not trained in this science.

22. Dealing with Misrepresentation Competence in a Science As a general rule, in matters concerning physics, the Institute of Psychics in Ireland would seek to have appropriately qualified physicists represented on any review panel which might be reporting on 'findings from physics'. Institute of Physics in Ireland ABA professionals never involved in writing Gov. sponsored reports in Ireland International standards of training in ABA ignored

23. Dealing with Misrepresentation How they do it in Scotland Scottish autism toolbox – The Scottish Government has deleted a key section of the Autism Toolbox on its web site, which contained seriously flawed information on ABA. … the description of ABA was inaccurate, 30 years out of date, and made no mention of recent research findings which indicate clear evidence of benefit for many children with autism.

24. Dealing with Misrepresentation How they do it in New Zealand “Feedback was sought on the draft ASD Guideline from across the health, education, disability and social service sectors, as well as from families, ... Most of the concerns expressed by individuals or groups related to a view that the principles of ABA had been misrepresented and that ABA research had not been properly evaluated in the draft ASD Guideline.” In response to these concerns, the Ministry commissioned a new review of literature on the effectiveness of ABA interventions for people with ASD.”

25. How they do it in the Netherlands ?

26. Leonardo da Vinci programme Conclusion "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