Bringing ABA to the Community:

Lessons from Ireland

Mickey Keenan

University of Ulster

Reykjavik, 2013

How do you help parents who have been

denied access to an effective science for

dealing with autism?

1. What science are you talking about?

2. How does it help parents?

3. In what way are parents denied

access to it?

4. How can you deal with the obstacles?

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

ABA-based procedures are highly effective

Surgeon General of the United States “Thirty years of research demonstrated the efficacy of applied

behavioral methods in reducing inappropriate behavior and in

increasing communication, learning, and appropriate

social behavior.”

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.”

Government agencies supporting the use of ABA-based procedures

New York State Department of Health

Maine Administrators of Services for Children with Disabilities

U.S. Dept. of Defense

National Standards Project – 2009 (http://www.nationalautismcenter.org/)

The overwhelming majority of interventions were developed

in the behavioural literature.

ABA in Ireland:

A parent’s perspective

Parents

Government officials

Cillian’s Story

His parents:

Professionals

who were unable to

offer practical advice

age 3 yrs 10 mths

Cillian’s diagnosis

age 3 yrs 10 mths

Cillian’s Story

Age 3

Cillian’s Story age 11 yrs

Reading a welcome address to an ABA conference

with a script he wrote himself!

Cillian, 2005

age 13 yrs

Age 3 Age 11

Cillian’s Story

A remarkable transformation by any standards

Cillian, 2005

Age 11 Age 3

Cillian’s Story age 13 yrs

• 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

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)

Person-Centered and Holistic perspective:

Evidence-based practice

Scientific Method

Applied to individuals (Adapted from Reese, 1978)

Person-Centered and Holistic perspective:

Evidence-based practice

Scientific Method

Applied to individuals (Adapted from Reese, 1978)

Person-Centered and Holistic perspective:

Evidence-based practice

Scientific Method

Applied to individuals (Adapted from Reese, 1978)

Person-Centered and Holistic perspective:

Evidence-based practice

Scientific Method

Applied to individuals (Adapted from Reese, 1978)

Person-Centered and Holistic perspective:

Evidence-based practice

Scientific Method

Applied to individuals (Adapted from Reese, 1978)

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

Category Mistake:

Indicative of lack of

understanding of

basic issues

Category Mistake in action

9th March, 2010

Minister for Education

The Task Group Report on Autism (2002)

published by the Department of Education:

“The Task Group finds preference for no single approach”

The Group concluded that “intervention programmes should be child-centred

rather than method-centred and should address the observed and unique needs

of the child.” I continue to accept this view and, therefore, do not promote one type

of intervention over another.

Chemistry is the science of matter, especially its properties, structure,

composition, behavior, reactions, interactions and the changes it undergoes.

Chemistry properties structure composition behavior reactions, interactions, changes

Science of Matter

ABA is the applied branch of the science of behaviour analysis

incorporating an understanding of basic principles like Stimulus Control,

Schedules, Shaping, ….

ABA Stimulus control schedules shaping ……. ……. …… …….

Science of Behaviour

Manualised applications of the science of behaviour in the area of autism

include PECS, DTT, NET, PT, VB, Lovaas, TEACCH.

ABA PECS DTT NET PT VB Lovaas TEACCH

Autism

Category Mistakes

X

X

X

ABA

The level of antagonism towards ABA

by professionals not trained in this science.

“Local professionals who work with young children

suggested to Task Group Members that they

would have grave reservations about being

involved in subjecting such your children to such

an intense behavioural programme for fear of

causing some kind of psychological damage.”

(N. Ireland Task Group report on Autism,

2002)

No references supplied to support this statement

RCTs

Before we can confidently employ a procedure like ABA

to meet the needs of an individual, there needs to be a

scientific study based on group designs (RCT) to assess

whether it is appropriate to use that treatment with an individual.

RCTs

Before we can confidently employ a procedure like ABA

to meet the needs of an individual, there needs to be a

scientific study based on group designs (RCT) to assess

whether it is appropriate to use that treatment with an individual.

“… the effectiveness of parachutes has not been subjected to rigorous

evaluation by using randomised controlled trials.” (Smith & Pell, 2003)

Before we can confidently employ a procedure like ABA

to meet the needs of an individual, there needs to be a

scientific study based on group designs (RCT) to assess

whether it is appropriate to use that treatment with an individual.

When that seemingly sensible statement is translated

with a proper understanding of ABA it reads as follows:

Before we can confidently employ the scientific method to

meet the needs of an individual using known principles of

behaviour, there needs to be a scientific study based on

group designs (RCT) to assess whether it is appropriate

to use the scientific method employed in single case designs

with an individual.

RCTs a procedure like ABA

whether it is appropriate

to use the scientific method

with an individual

Dealing with Misrepresentation

Competence in a Science As a general rule, in matters concerning physics, the Institute of Physics

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

Gatekeepers prevent accurate info reaching policy makers

No Comment

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.

Dealing with Misrepresentation

“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.”

How they do it in New Zealand

Dealing with Misrepresentation

In response to these concerns, the Ministry commissioned a new review of

literature on the effectiveness of ABA interventions for people with ASD.”

How they do it in Iceland

?

"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

Conclusion

Conclusion

Leonardo da Vinci

programme Not an INTERVENTION but

a multimedia tutorial on 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