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A health technology assessment of Lovaas Autism Treatment : the role of evidence in legal, health policy… Beard, Sandra Lynn 2007

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A HEALTH TECHNOLOGY ASSESSMENT OF LOVAAS AUTISM TREATMENT: THE ROLE OF EVIDENCE IN LEGAL, HEALTH POLICY AND HEALTH CARE CONTEXTS by  SANDRA LYNN BEARD B.S.N., The University of British Columbia, 1997 M.S.N., The University of British Columbia, 1999  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY  in  The Faculty of Graduate Studies  (Health Care and Epidemiology)  THE UNIVERSITY OF BRITISH COLUMBIA  APRIL 2007  © Sandra Lynn Beard, 2007  ABSTRACT  In 1998 parents of autistic c h i l d r e n l a u n c h e d a Charter of Rights and Freedoms c h a l l e n g e a g a i n s t t h e P r o v i n c e of B C for failing to f u n d L o v a a s Autism Treatment (LAT) (Auton et al.). A l t h o u g h initially successful, in 2004 the S u p r e m e C o u r t of C a n a d a o v e r t u r n e d the l o w e r courts' decisions a n d r e j e c t e d the p a r e n t s ' claims for p u b l i c f u n d i n g . In a d d i t i o n to the Charter issue, these l e g a l p r o c e e d i n g s also h i g h l i g h t e d the discourse o v e r j u d i c i a l p o l i c y m a k i n g a n d the Courts' interpretation of m e d i c a l e v i d e n c e - specifically, the effectiveness of LAT. The use of m e d i c a l e v i d e n c e in l a w h a d b e e n identified as a n issue b y b o t h the A m e r i c a n Institute of M e d i c i n e (IOM) a n d the A g e n c y for H e a l t h c a r e R e s e a r c h a n d Quality (AHRQ). This thesis w a s d e s i g n e d to e x p a n d o n the l O M / A H R Q ' s previous work b y investigating t h e c o n c e p t u a l i z a t i o n s a n d p r o c e s s e s u s e d b y law, h e a l t h p o l i c y a n d h e a l t h c a r e within the c o n t e x t of the Auton l e g a l p r o c e e d i n g s in o r d e r to g a i n a n u n d e r s t a n d i n g of h o w e a c h d o m a i n seeks, u n d e r s t a n d s a n d a p p l i e s e v i d e n c e . This w a s a c c o m p l i s h e d in t w o parts. First, the l e g a l d i m e n s i o n of a c o m p r e h e n s i v e h e a l t h t e c h n o l o g y assessment (HTA) f r a m e w o r k utilized a q u a l i t a t i v e g r o u n d e d theory m e t h o d o l o g y to e x a m i n e p a r t i c i p a n t interviews a n d l e g a l d o c u m e n t s . This analysis resulted in a c o n c e p t u a l f r a m e w o r k of scientific e v i d e n c e p a t h w a y s that further d e f i n e d , c o n t e x t u a l i z e d a n d d i m e n s i o n a l i z e d the p h e n o m e n a of s e e k i n g , u n d e r s t a n d i n g , a n d a p p l y i n g e v i d e n c e within the three sectors. G r o u n d e d theory p r o v e d to b e a n e f f e c t i v e a p p r o a c h for exploring t h e l e g a l c o n t e x t a n d serves to b r o a d e n the s c o p e of e v i d e n c e HTA researchers c a n offer. S e c o n d , t h e effectiveness d i m e n s i o n of the HTA f r a m e w o r k e m p l o y e d the m e t h o d s of systematic r e v i e w a n d critical a p p r a i s a l to investigate the current state of k n o w l e d g e o n t h e effectiveness of LAT. This analysis c o n c l u d e d that there remains a p a u c i t y of rigorously d e s i g n e d studies d u e to o n g o i n g m e t h o d o l o g i c a l limitations. O v e r a l l , t h e strength of t h e b o d y of e v i d e n c e o n LAT w a s p o o r a n d d i d little to a d v a n c e its effectiveness c l a i m s . Together, these t w o analyses p r o v i d e d a n u p d a t e o n the effectiveness of L o v a a s Autism Treatment; insight into h o w t h e e v i d e n c e of LAT w a s h a n d l e d in the Auton c a s e ; a n d a d e p i c t i o n of h o w the sectors of law, h e a l t h p o l i c y a n d h e a l t h c a r e c o n c e p t u a l i z e the e v i d e n t i a r y p r o c e s s in g e n e r a l .  TABLE OF CONTENTS Abstract Table of Contents List of Tables List of Figures Acknowledgements Dedication  vi vii ix  CHAPTER 1 Background, Objectives and Rationale  1.1 1.2 1.3  1.4 1.5 1.6 1.7 1.8  1.9 1.10 1.11 1.12 1.13 1.14  Autism Spectrum Disorder Early Intensive Behavioural Intervention/Applied Behavioural Analysis 1.2.1 Lovaas Autism Treatment Precedent Lovaas Research 1.3.1 Lovaas, 1987 1.3.2 McEachin, 1993 Critiques of Lovaas & McEachin BC Autism Intervention Programs Policy Framework Pertinent Legislative Frameworks Legal Context 1.8.1 Auton : 1.8.2 Anderson C a n a d i a n Legal System 1.9.1 C a n a d i a n Charter of Rights a n d Freedoms Other Health Care Charter Cases Legal Reviews of Auton Objectives Rationale Research Questions..  CHAPTER 2 Conceptual Framework  2.1  2.2  2.3  Understanding the Role of Evidence in Law, Health Policy a n d Health Care 2.1.1 C o n c e p t of Evidence 2.1.2 Opposing Conceptualizations of Evidence 2.1.3 Conceptual Background Processes for Seeking, Understanding and Applying Evidence: Legal Context 2.2.1 Judicial Policy Making 2.2.2 Legal Discovery 2.2.3 Rules of Evidence 2.2.4 Burden of Proof 2.2.5 Standard of Care: Expert Witnesses & Clinical Practice Guidelines Processes for Seeking, Understanding and Applying Evidence: Health Policy Context 2.3.1 Policy Process: The Policy Cycle  1 3 5 7 7 8 11 17 20 24 27 27 31 37 39 41 48 52 52 53 55  55 55 57 57 63 63 64 65 68 69 72 72  2.3.2  2.4  2.5  Evidence-based Decision Making: Health Technology Assessment Processes for Seeking, Understanding a n d Applying Evidence: Health Care Context 2.4.1 Peer Review Process 2.4.2 Consensus Development 2.4.3. Evidence-based Medicine 2.4.3.1 Randomized Controlled Trials 2.4.3.2 Alternate Study Designs 2.4.3.3 Clinical Practice Guidelines C o n c e p t u a l Framework  CHAPTER 3 Research Design & Methodologies  3.1  3.2  Grounded Theory: The Legal Context 3.1.1 Grounded Theory Methodology 3.1.2 QSR N6 qualitative research software Systematic Review a n d Critical Appraisal: The Effectiveness Context 3.2.1 Systematic Review 3.2.2 Study Quality Assessment 3.2.3 Critical Appraisal 3.3.4 Summary of Research Design  CHAPTER 4 Results  4.1  4.2  Analysis of the Role of Evidence 4.1.1 Descriptive Analysis of C o n c e p t u a l Categories 4.1.1.1 Perspective of Evidence 4.1.1.2 Rules of Evidence 4.1.1.3 Process of C h a n g e 4.1.1.4 Adjudicators of Evidence 4.1.1.5 Decision-Makers of Evidence 4.1.1.6 Focus of Application of Evidence 4.1.1.7 Judicial Policy Making 4.1.2 Scientific Evidence Pathways Analysis of Lovaas Effectiveness 4.2.1 Search Results a n d Study Selection 4.2.2 Study Quality Assessment 4.2.3 Critical Appraisal of Study Methods  CHAPTER 5 Discussion and Conclusions  5.1  Discussion 5.1.1 The Role of Evidence in Legal, Health Policy a n d Health Care Contexts: Seeking, Understanding a n d Applying Evidence 5.1.2 Application of Concepts to a Judicial Policy Making Case Study: Auton et al 5.1.3 Effectiveness of Lovaas Autism Treatment 5.1.3.1 Descriptive Data Synthesis 5.1.3.2 Clinical Heterogeneity 5.1.3.3 Methodological Heterogeneity 5.1.3.4 Heterogeneity in Results 5.1.3.5 The Current State of Knowledge on Lovaas Effectiveness Evidence 5.1.3.5.1 Advances a n d Improvements  81 86 86 88 90 98 99 99 101 103  104 104 113 115 115 118 122 124 126  126 127 127 128 130 132 135 139 140 141 142 142 144 146 164  164  164 171 174 174 174 176 178 178 179 iv  5.1.3.6  5.2 5.3 5.4  5.1.3.5.2' Ongoing Methodological Issues 5.1.3.5.3 Included Studies'Reported Limitations 5.1.3.5.4 Unanswered Research Questions Strength of Body of Evidence 5.1.3.6.1 Quality of the Included Trials 5.1.3.6.2 Size and Significance of Observed Effects 5.1.3.6.3 Consistency of Effects Across Trials 5.1.3.6.4 Dose-response Relationships 5.1.3.6.5 Other Plausible Competing Explanations  Conclusions Strengths and Limitations Further Research  References  191  Appendices  205  Appendix A Appendix Appendix Appendix Appendix Appendix Appendix  B C D E F G  Appendix H Appendix I Appendix J Appendix Appendix Appendix Appendix Appendix Appendix Appendix  179 180 181 182 182 182 184 184 184 186 189 189  K L M N O P Q  The Role of Evidence in Legal, Health Policy a n d Health Care Contexts ! Scientific Evidence Pathways: Initial Framework Participant Letter of Introduction Participant Consent Form Search Strategy Study Selection Form Study Quality Assessment Tool for RCTs: Modified J a d a d Scale Study Quality Assessment Tool for Observational Studies: Reisch Data Extraction Form Seeking, Understanding and Applying Evidence: Key Concepts a n d Findings Interview Questions Scientific Evidence Pathways: Revised Framework Excluded Retrieved Papers Summary of Included Studies Analysis of Heterogeneity Between Groups Direction of Biases UBC Research Ethics Board Certificate of Approval  205 206 207 208 210 219 221 223 228 237 243 249 250 254 272 279 281  LIST OF TABLES  Table 1.1 Table 2.1 Table 2.2 Table 2.3 Table 3.1 Table 3.2 Table 3.3 Table 4.1 Table 4.2 Table 4.3 Table 5.1  Summary of legal cases 36 Policy cycle 72 Decision making strategies 78 Comprehensive health technology assessment framework 83 Study selection criteria 116 AHRQ coding criteria 118 Reisch quality assessment tool: revised criteria 122 Summary of reasons for exclusion of studies 143 Reisch quality assessment indices for the included observational studies... 144 J a d a d quality assessment indices for the included randomized controlled trials 145 Statistically significant mean between-group differences at  follow-up  183  vi  LIST O F FIGURES  Figure 2.1 Figure 3.1 Figure 3.2 Figure 4.1  The context, actors and level of application of the evidentiary process The indicator-concept model Study Design: The legal and effectiveness contexts of the comprehensive HTA framework The context, actors a n d focus of application of the evidentiary process (revised)  101 109 124 126  vii  ACKNOWLEDGEMENTS  I would b e remiss if I did not express my sincere gratitude to the key people who assisted me with this thesis. Many thanks to Mary-Doug Wright for her proficiency in systematic literature searches and Carolyn Green for her assistance as my second reviewer. Special appreciation also goes to my thesis committee - Anthony Sheppard, for guiding me through the unfamiliar maze of law and Ken Bassett, for his prowess with systematic reviews. And most importantly, my sincere thanks to Arminee Kazanjian, my thesis supervisor, for her kindness and patience as she guided me towards my vision for my research.  DEDICATION  It is with great love and admiration that I dedicate my thesis to my husband Jonathan a n d our children Jordan a n d Devon. During difficult times, both academically a n d personally, their unconditional love a n d support were what kept me focused. I am also extremely grateful to a late friend - Judi Moore - who sparked my interest in further education a n d continuously challenged me to reach for higher goals. And to my parents - Earle a n d Lilian Fleming - for their genuine interest in my work and their encouragement to never give u p o n a dream.  CHAPTER 1: B A C K G R O U N D , OBJECTIVES A N D  RATIONALE  Autism S p e c t r u m Disorder  Autism S p e c t r u m Disorder (ASD) is a c o n s t e l l a t i o n of three p e r v a s i v e d e v e l o p m e n t a l disorders (PDD) of c h i l d h o o d : (a) autistic disorder (AD), (b) A s p e r g e r s y n d r o m e , a n d (c) p e r v a s i v e d e v e l o p m e n t a l disorder-not otherwise s p e c i f i e d (PDD-NOS). O t h e r c o n d i t i o n s that c o m p r i s e t h e b r o a d e r definition of PDD i n c l u d e Rett s y n d r o m e a n d c h i l d h o o d disintegrative disorder ( C D D ) . Autism w a s first d e s c r i b e d in 1943 b y Dr. Leo Kanner, w h e n a.small g r o u p of c h i l d r e n w e r e f o u n d to display a b n o r m a l c h a r a c t e r i s t i c s s u c h as e x t r e m e a l o o f n e s s , i n d i f f e r e n c e to other p e o p l e , m i n i m a l e y e c o n t a c t , s e v e r e l a n g u a g e deficits, a t y p i c a l responses to stimuli, minimal p r e t e n d or i m a g i n a t i v e play, a n d l a c k of desire to c o m m u n i c a t e ( A m e r i c a n A c a d e m y of Pediatrics, 2001). H o w e v e r , it w a s not until 1980 w h e n the term "infantile a u t i s m " w a s first r e c o g n i z e d as a d i a g n o s t i c criterion in the Diagnostic and Statistical Manual of Mental Disorders (DSM). S i n c e t h e n , t h e definition a n d criterion h a v e b e e n e x p a n d e d to i n c o r p o r a t e milder a n d m o r e c o m m o n forms of this c o n d i t i o n . PDD a r e lifelong n e u r o l o g i c a l disabilities of u n k n o w n e t i o l o g y that g e n e r a l l y result in variations of i m p a i r e d socialization, c o m m u n i c a t i o n , a n d b e h a v i o u r . B e c a u s e autism is a s p e c t r u m disorder, s y m p t o m s a r e a h e t e r o g e n e o u s mix with distinct variations a m o n g c h i l d r e n . There is n o universal d e v e l o p m e n t a l d e l a y or b e h a v i o u r that classically d e p i c t s autism. Very y o u n g c h i l d r e n typically present with s y m p t o m s of d e l a y e d socialization s u c h as p o o r e y e c o n t a c t a n d a disinterest in their surroundings. They of ten a p p e a r to b e i n w a r d l y f o c u s e d a n d resist p h y s i c a l c o n t a c t . C o m m u n i c a t i o n is d e l a y e d a n d o n c e it a p p e a r s it is rote, repetitive, a n d l a c k i n g p u r p o s e . These c h i l d r e n s e l d o m interact with others a n d display b e h a v i o u r s s u c h as r o c k i n g , f l a p p i n g of their h a n d s a n d rituals s u c h as repetitively s t a c k i n g b l o c k s . Intelligence c a n vary from s e v e r e m e n t a l r e t a r d a t i o n to superior intellectual abilities. M o r e s p e c i f i c a l l y , A D is c h a r a c t e r i z e d b y d e v e l o p m e n t a l d e l a y s in s o c i a l i n t e r a c t i o n , c o m m u n i c a t i o n , a n d i m a g i n a t i v e p l a y . These c h i l d r e n t y p i c a l l y d e m o n s t r a t e s t e r e o t y p e d b e h a v i o u r s , interests a n d activities. A l t h o u g h these b e h a v i o u r s o c c u r in late i n f a n c y , there a r e c a s e s w h e r e d e v e l o p m e n t a l milestones that w e r e o n c e a c h i e v e d regress or a r e lost in their entirety. Studies a r e currently u n d e r w a y to identify early signs of autism ( Z w a i g e n b a u m e t al., 2005). S o m e of this preliminary r e s e a r c h i n d i c a t e s that b y the a g e of 12 months infants w h o w e r e later d i a g n o s e d as autistic d i f f e r e d f r o m o t h e r infants in t h e following a r e a s : (a) b e h a v i o u r a l markers s u c h as a t y p i c a l e y e c o n t a c t , orienting to n a m e , s o c i a l smiling; (b) p r o l o n g e d l a t e n c y to d i s e n g a g e visual a t t e n t i o n ; (c) t e m p e r a m e n t (passivity f o l l o w e d b y e x t r e m e distress reactions); a n d (d) d e l a y e d expressive a n d receptive language.  1  A s p e r g e r s y n d r o m e , o n the other h a n d , is limited to i m p a i r m e n t s in s o c i a l interactions s u c h as p e e r relationships, a l a c k of e m p a t h y , a n d obsessions a b o u t c e r t a i n t o p i c s . L a n g u a g e d e v e l o p m e n t is not a f f e c t e d a n d A s p e r g e r ' s c h i l d r e n a r e typically of a v e r a g e to a b o v e a v e r a g e i n t e l l i g e n c e . It is not yet k n o w n w h e t h e r A s p e r g e r is a c t u a l l y a higher f u n c t i o n i n g form of autism or i n d e e d a u n i q u e c o n d i t i o n of its o w n . The third ASD - p e r v a s i v e d e v e l o p m e n t a l disorder not otherwise s p e c i f i e d (PDD-NOS) - is a n a t y p i c a l form of autism that is o f t e n u s e d as a diagnosis w h e n c h i l d r e n d o not c l e a r l y fall within the d e f i n e d criteria of t h e o t h e r c a t e g o r i e s . With all three classifications of ASD, a multi-disciplinary t e a m c a n usually m a k e a diagnosis b y the time a c h i l d is t w o years o l d (Lord, 1995; Lord & M c G e e , 2001). The Diagnostic and Statistical Manual of Mental Disorders (DSM IV-TR) lists t w e l v e criteria for autistic disorder. These criteria a r e d i v i d e d into: (a) i m p a i r m e n t s in q u a l i t a t i v e s o c i a l interactions, (b) i m p a i r m e n t s in q u a l i t a t i v e c o m m u n i c a t i o n , a n d (c) restricted, repetitive a n d s t e r e o t y p e d patterns of b e h a v i o u r , interests a n d activities. B e c a u s e t h e D S M IV-TR criteria w e r e d e v e l o p e d for c h i l d r e n 3 years of a g e a n d older, a t t e m p t s to d i a g n o s e y o u n g e r c h i l d r e n m a y b e difficult until all c h a r a c t e r i s t i c s a r e d e m o n s t r a t e d . Therefore, a diagnosis of PDD-NOS m a y b e p r o f f e r e d until t h e c h i l d "grows i n t o " the full diagnosis of A D . H o w e v e r , assigning a preliminary diagnosis remains s o m e w h a t controversial. O n the o n e h a n d , while there is s o m e consensus that the earlier intervention is b e g u n t h e m o r e b e n e f i c i a l the o u t c o m e s , this must b e b a l a n c e d a g a i n s t the s o c i a l a n d f i n a n c i a l i m p a c t s of a false positive diagnosis. There a r e c o n f l i c t i n g opinions o n p r e v a l e n c e a n d i n c i d e n c e rates for autism. O n e review of twenty-three English l a n g u a g e e p i d e m i o l o g i c a l surveys p u b l i s h e d b e t w e e n 1966 a n d 1998 f o u n d that p r e v a l e n c e rates i n c r e a s e d e a c h s u c c e s s i v e p u b l i c a t i o n y e a r ( F o m b o n n e , 1999). In that review, t h e m e d i a n p r e v a l e n c e rate for autism rose from 5.2 per 10,000 for studies p u b l i s h e d b e f o r e 1989 to 7.2 p e r 10,000 for studies after 1989, while the i n c i d e n c e of autism r e m a i n e d s t a b l e a t 0 . 2 % (with rates i n c r e a s i n g to 3-7% for siblings of autistic children). H o w e v e r , the a u t h o r c o n t e n d s t h a t c l a i m s of a n autism e p i d e m i c a r e u n f o u n d e d d u e to m e t h o d o l o g i c a l limitations of the existing d a t a , c h a n g e s in c a s e definition, i m p r o v e d c a s e r e c o g n i t i o n , b r o a d e r c o n c e p t of autism, a n d r e c o g n i t i o n of autism a m o n g s t normally intelligent p e o p l e ( F o m b o n n e , 2001). A n u p d a t e to the 1999 F o m b o n n e r e v i e w s a w the p r e v a l e n c e rate rise to 10.0 p e r 10,000 ( F o m b o n n e , 2003). H o w e v e r , a g a i n the a u t h o r attributes the rise to i m p r o v e d c a s e definition a n d a w a r e n e s s of autism. In B C , a p p r o x i m a t e l y 262 n e w c a s e s of ASD a r e p r e d i c t e d e a c h year, yielding a p r e v a l e n c e of 0.65% (Wellington, 2003). Autism targets m a l e s m o r e t h a n f e m a l e s with a ratio of 3.8:1, a n d is not c o r r e l a t e d to a n y s p e c i f i c e t h n i c g r o u p nor to s o c i a l factors s u c h as a family's i n c o m e , lifestyle or e d u c a t i o n a l level.  2  Early Intensive Behavioural Intervention/Applied Behavioural Analysis  Early Intensive Behavioural Intervention (EIBI) is a generic term referring to-comprehensive and intensive forms of behavioural interventions; another synonymous term is Applied Behaviour Analysis (ABA). With research dating back to the 1960s, EIBI/ABA claims to be one of the most efficacious treatment modalities for children with the life-long affliction of autism (Heflin & Simpson, 1998). ABA is the science of human behaviour. It is an objective, systematic process of applying interventions based on the principles of learning theory in an attempt to improve, socially significant behaviours (Association for Science in Autism Treatment, 2004). Behaviour modification enlists three general approaches to treatment: (a) operant conditioning, (b) respondent conditioning, a n d (c) cognitive conditioning (New York State Department of Health, 1999). Most of the current practices focus on operant conditioning to: 1. Increase certain behaviours 2. Teach new skills (e.g., communication, social skills) 3.  Maintain behaviours (e.g., teaching self-control)  4. Generalize or to transfer behaviour from one situation to another (e.g., from the resource room to the mainstream classroom) 5.  Restrict or narrow conditions under which interfering behaviours occur (e.g., modifying the learning environment)  6.  Reduce interfering behaviours (e.g., self injury) (Association for Science in Autism Treatment, 2004)  Since autistic children typically exhibit maladaptive behaviours that c a n b e socially inappropriate, self-injurious, or physically and psychologically demanding on their parents, . immediate treatment that focuses on changing this behaviour is the priority. Behavioural intervention is usually the treatment of c h o i c e for autistic children. EIBI/ABA therapy is strictly structured and delivered at high intensity in order to reinforce learned behaviours. Interventions are designed to assist children to obtain and/or alter behaviours through a process of reinforcing adaptive responses and suppressing maladaptive behaviours. Two major assumptions underlie the foundation of EIBI/ABA. The first assumption is grounded in theories of neurobiological development, critical and sensitive periods, attachment theory, infant learning paradigms, prevention theory, and intervention research. This is the assumption that EIBI/ABA should be administered during the preschool years when the brain is most a m e n a b l e to structural a n d functional c h a n g e (Bailey, Aytch, O d o m , Symons, & Wolery, 1999). The second set of assumptions is derived from theories of family systems, stress and coping, ecological development, parental roles, and cultural influences, a n d holds as its core principle the c o n c e p t of family-centered practice (Bailey, et al., 1999; Guralnick, 2001). EIBI/ABA c a n be delivered via three different instructional methodologies: (a) discrete trial training (DTT), (b) naturalistic teaching or errorless teaching, and (c) incidental learning. DTT 3  involves breaking down skills and teaching them one step at a time with the child mastering the simple skills before progressing on to more complex ones. This takes place in the form of a "training trial" format and consists of four components: 1. The teacher or therapist presents a brief, distinctive instruction or question (stimulus). 2. The instruction is followed by a prompt, if the child needs one, to elicit the correct response. 3. The child responds correctly or incorrectly (the response). 4. The teacher or therapist provides an appropriate "consequence". (Association for Science in Autism Treatment, 2004) DTT is also known as the "ABC model," whereby each trial consists of: (a) an Antecedent (a "directive"); (b) a Behaviour (a "response"); and (c) a Consequence (a "reaction") (Autism Society of America, 1998). DTT is also referred to as the "Clinical/Prescriptive" method and as "Formal Compliance Training". The discipline of ABA focuses on reliable measurements and objective evaluation of observable behaviour. Outcomes are operationalized in quantifiable ways in order to measure frequencies and durations of specific behaviours. Evaluation of each individual trial is a critical part of therapy. If a response is not elicited within 5 seconds (or the response is incorrect) that trial ends and a new one begins. Children's response to therapy is monitored by detailed data collection. Once a skill is mastered (for example, a correct response achieved at least 80% of the time, as judged by two therapists), then that particular-skill is added to a maintenance schedule so that learned skills are revisited to prevent regression. In addition, these skills are adapted in order to ensure generalization to different people, settings, and materials (Autism Society of America, 1998). Behavioural programs can take place in a variety of settings. Typically, ABA begins in the home when children are young, as this is a natural learning environment. However, this approach involves a tremendous amount of input and support from the family. Other programs may advocate a school or clinic-based setting as principles of ABA can be more consistently adhered to. In any case, the program invariably transitions to community and educational settings once the children have learnt the basic behavioural and social skills. . Properly designed and executed ABA programs [should] contain many if not all of the components of effective treatment approaches... namely: individualized instruction tailor-made to address the specific needs of the child, behaviourally based methodology, low student-teacher ratio, early treatment, and family involvement. (Autism Society of America, 1998) Programs are supervised by an ABA consultant who typically receives preparatory training in a university program. It is important to note that there are many different interpretations and contexts of applied behavioural analysis. Many speech and language therapy programs, in 4  a d d i t i o n to e d u c a t i o n a l interventions, a r e also g r o u n d e d in the principles of b e h a v i o u r a l t h e r a p y . In a d d i t i o n , s o m e autism intervention p r o g r a m s c o m b i n e EIBI/ABA with other approaches. Lovaas Autism Treatment While p s y c h o l o g i s t Dr. O . Ivar L o v a a s r e f i n e d t h e L o v a a s Autism T r e a t m e n t (LAT) p r o g r a m at the University of C a l i f o r n i a Los A n g e l e s (UCLA) during the 1980s, its origins a r e r o o t e d in previous b e h a v i o u r a l work with institutionalized c h i l d r e n d a t i n g b a c k to 1963. A n i m p o r t a n t distinction is that LAT is not s y n o n y m o u s with EIBI/ABA; it is a subset b a s e d o n similar principles. LAT e m p l o y s the intensive, one-on-one DTT m e t h o d o l o g i c a l a p p r o a c h with b e h a v i o u r a l interventions c a r r i e d out for 20-40 hours p e r w e e k b y a t e a m of therapists, parents a n d e v e n t u a l l y , t e a c h e r s . Its intensity m a k e s it a costly intervention with estimates of b e t w e e n $45,000 - $60,000 C A D per c h i l d per y e a r (Ludwig & Harstall, 2000; S u p r e m e C o u r t of B C , 2000). C h i l d r e n b e g i n the p r o g r a m as s o o n as possible after diagnosis (ideally b e f o r e a g e 4) a n d c o n t i n u e for a t w o to t h r e e y e a r p e r i o d . The p r o g r a m consists o f a p p r o x i m a t e l y 500 i n d i v i d u a l tasks to b e learnt. The therapist initially f o c u s e s o n t e a c h i n g self-help a n d r e c e p t i v e l a n g u a g e sills, n o n v e r b a l a n d v e r b a l imitation, a n d a p p r o p r i a t e p l a y b e h a v i o u r s . P a r e n t a l i n v o l v e m e n t is c r u c i a l to p r o v i d e c o n s i s t e n c y in m a n a g i n g b e h a v i o u r s . Next, c h i l d r e n progress t o w a r d s l e a r n i n g expressive a n d early a b s t r a c t l a n g u a g e a n d i n t e r a c t i v e p l a y with peers e v e n t u a l l y l e a d i n g t o w a r d s a n a d v a n c e d a p p l i c a t i o n , assimilating the skills for a c a d e m i c tasks, socialization, c a u s e e f f e c t relationships, a n d o b s e r v a t i o n a l l e a r n i n g . In its original format, i n a p p r o p r i a t e b e h a v i o u r s w e r e o f t e n m a n a g e d b y aversive m e t h o d s s u c h as shouting " n o " or a s l a p o n the thigh, but, these h a v e s i n c e b e e n r e p l a c e d with strategies s u c h as ignoring a n d i m p l e m e n t i n g a time-out. Of interest, o n e study e x a m i n e d the e f f e c t of r e m o v i n g n e g a t i v e v e r b a l f e e d b a c k from the L o v a a s p r o g r a m (White, 2000). Results a c t u a l l y s h o w e d a trend t o w a r d s n e g a t i v e f e e d b a c k increasing skill a c h i e v e m e n t a l o n g with a decrease  in the n u m b e r of m a l a d a p t i v e b e h a v i o u r s .  L o v a a s a t t e s t e d that only a practitioner directly linked with the original L o v a a s p r o g r a m c o u l d c l a i m to a p p l y LAT. L o v a a s therapists of ten carry the d e s i g n a t i o n of " C e r t i f i e d A p p l i e d B e h a v i o u r Analyst" t h r o u g h s p e c i a l i z e d training c o n d u c t e d at U C L A . These consultants a r e master's p r e p a r e d g r a d u a t e s w h o h a v e u n d e r t a k e n a 9-month internship consisting of 30 hours p e r w e e k of training. L o v a a s purports that c e r t i f i c a t i o n is a critical c o m p o n e n t in o r d e r to m a i n t a i n quality c o n t r o l of this particular a p p r o a c h to A B A . It is c l a i m e d that, w h e n IBI is i m p l e m e n t e d at a n early a g e , s o m e autistic c h i l d r e n will c a t c h u p with their n o r m a l peers b y g r a d e o n e (Lovaas, 1987); h o w e v e r , to d a t e there is n o reliable e v i d e n c e to substantiate this c l a i m (Basset et al., 2000; ECRI, 2000; Smith, 1999). The c e n t r a l point of controversy surrounding IBI is the e f f i c a c y / e f f e c t i v e n e s s c l a i m s of the various types of p r o g r a m s . While there a r e numerous p u b l i s h e d articles o n the t o p i c , there is a p a u c i t y of m e t h o d o l o g i c a l l y v a l i d studies. O n e t e c h n o l o g y assessment of c o m p r e h e n s i v e t r e a t m e n t 5  p r o g r a m s in the United States l o c a t e d 528 articles of w h i c h only 18 m e t the inclusion criterion of i n c o r p o r a t i n g a c o n t r o l g r o u p (ECRI, 2000). After a s u b s e q u e n t r e v i e w of the internal, external, statistical c o n c l u s i o n s a n d construct validity of t h e s e r e m a i n i n g 18 studies, 13 w e r e f o u n d to b e "fatally f l a w e d " . Three of these final five studies w e r e b e h a v i o u r a l p r o g r a m s b a s e d o n t h e L o v a a s m e t h o d . A l t h o u g h the L o v a a s g r o u p s h o w e d a n i m p r o v e m e n t in IQ scores a n d in s o m e functional p a r a m e t e r s , b e c a u s e of study d e s i g n problems, this g a i n c o u l d not b e a t t r i b u t e d to the m e t h o d of t r e a t m e n t . A n o t h e r systematic r e v i e w a n d critical a p p r a i s a l (Bassett, et a l . 2000) w a s also successful in u n c o v e r i n g 1200 EIBI abstracts. (This s e a r c h strategy w a s not limited to the United States a n d also i n c o r p o r a t e d a s e a r c h for fugitive literature). After the a p p l i c a t i o n of the N a t i o n a l Institute of H e a l t h criteria (for e v a l u a t i o n of primary effectiveness d a t a ) , the s a m e primary L o v a a s studies t h a t h a d b e e n u n c o v e r e d b y the ECRI report r e m a i n e d . A g a i n , it w a s d e t e r m i n e d t h a t "while m a n y forms of intensive b e h a v i o u r a l t h e r a p y c l e a r l y benefit c h i l d r e n with autism, there is insufficient, scientifically-valid effectiveness e v i d e n c e to establish a c a u s a l relationship b e t w e e n a particular p r o g r a m of intensive, b e h a v i o u r a l t r e a t m e n t , a n d the a c h i e v e m e n t of ' n o r m a l f u n c t i o n i n g ' " (p. ix). Smith (1999) c o n d u c t e d a systematic r e v i e w of early intervention t h e r a p i e s b e t w e e n 1980 a n d 1999 a n d u n c o v e r e d nine " b e h a v i o u r a n a l y t i c t r e a t m e n t p r o g r a m s " , five of w h i c h w e r e L o v a a s - b a s e d ( A n d e r s o n et. al., 1987; Birnbrauer & L e a c h , 1993; L o v a a s , 1987; M c E a c h i n et al., 1993; S h e i n k o p f & Siegel, 1998). O n l y the L o v a a s a n d the follow-up M c E a c h i n studies w e r e b a s e d o n the original U C L A L o v a a s project; the others w e r e partial r e p l i c a t i o n studies that i n c o r p o r a t e d v a r y i n g intensities of t r e a t m e n t a n d levels of therapist training. A l t h o u g h Smith w a s a c o - a u t h o r of the M c E a c h i n study, h e g e n e r a l l y c o n c u r r e d with previous reviewers' criticisms of the m e t h o d o l o g i c a l flaws of these studies. W h e n discussing the r e p l i c a t i o n studies h e c o n c l u d e d t h a t u n d e r s o m e c i r c u m s t a n c e s early intervention m i g h t not yield positive results. H o w e v e r , w h e n s p e a k i n g a b o u t the original U C L A studies, h e n o t e d that to d a t e this p r o g r a m h a d the most f a v o u r a b l e o u t c o m e s a n d the strongest m e t h o d o l o g y . Yet, h e a p p e a l e d to the r e s e a r c h c o m m u n i t y to d e s i g n future studies that w e r e scientifically rigorous.  6  Precedent Lovaas Research Lovaas, 1987 In 1987 L o v a a s p u b l i s h e d t h e results of his study o n intensive b e h a v i o u r m o d i f i c a t i o n in t h e Journal of Consulting and Clinical Psychology. This report ( a l o n g with its follow-up in 1993 b y M c E a c h i n e t al.) w e n t o n to b e c o m e p r e c e d e n t r e s e a r c h studies for t h e field of a p p l i e d b e h a v i o u r a l analysis. L o v a a s ' r e s e a r c h w a s t h e c u l m i n a t i o n of a b e h a v i o u r a l intervention project that b e g a n in 1970 a t t h e University of C a l i f o r n i a , Los A n g e l e s . L o v a a s ' study c o m p a r e d t w o g r o u p s : (a) e x p e r i m e n t a l g r o u p (>40 hrs/week of 1:1 intensive t r e a t m e n t ) ; a n d (b) control #1 (<10 hrs/week of t h e s a m e 1:1 intensive t r e a t m e n t , plus a variety of other treatments). C o n t r o l #1 w a s u s e d to d e t e r m i n e t h e rate of s p o n t a n e o u s i m p r o v e m e n t in autistic c h i l d r e n . L o v a a s also i n c o r p o r a t e d a s e c o n d c o n t r o l g r o u p of c h i l d r e n w h o h a d b e e n s e l e c t e d from a c o h o r t of c h i l d r e n that h a d previously b e e n s t u d i e d b y F r e e d m a n et a l . (1985). This g r o u p w a s a s s e m b l e d to c o u n t e r p o t e n t i a l criticisms that c h i l d r e n referred to t h e study might h a v e c o n s t i t u t e d a s u b g r o u p of c h i l d r e n with either f a v o u r a b l e or u n f a v o u r a b l e o u t c o m e s . L o v a a s d e s c r i b e d the inclusion criteria for this c o n t r o l g r o u p , a n d s t a t e d that these c h i l d r e n w e r e t r e a t e d like C o n t r o l G r o u p 1 subjects with t h e e x c e p t i o n b e i n g that t h e intervention w a s a d m i n i s t e r e d outside of t h e Y o u n g Autism Project. Parents of c h i l d r e n in b o t h groups r e c e i v e d extensive training a n d w e r e a c t i v e l y i n v o l v e d in their child's t r e a t m e n t p l a n . Physical aversives w e r e only utilized o n t h e e x p e r i m e n t a l g r o u p . Treatment intensity w a s r e d u c e d to 10 hrs/week in k i n d e r g a r t e n for those c h i l d r e n progressing normally; others c o n t i n u e d to r e c e i v e 40 hrs/week f o r r n o r e t h a n 6 years. A s s i g n m e n t to t r e a t m e n t groups w a s not r a n d o m i z e d , " d u e to p a r e n t protest a n d e t h i c a l c o n s i d e r a t i o n " (p. 4). Instead, assignment w a s b a s e d o n t h e availability of therapists. L o v a a s r e p o r t e d , " b e c a u s e fluctuations in staff availability w e r e not a s s o c i a t e d in a n y w a y with client c h a r a c t e r i s t i c s it w a s a s s u m e d that this assignment w o u l d p r o d u c e u n b i a s e d g r o u p s " (p. 4). The inclusion criteria c o n s i s t e d of: (a) a n i n d e p e n d e n t diagnosis of autism from a m e d i c a l d o c t o r or PhD p s y c h o l o g i s t ( b a s e d o n DSM-III criteria), (b) c h r o n o l o g i c a l a g e of less t h a n 40 months if m u t e a n d less t h a n 46 months if e c h o l a l i c , a n d (c) p r o r a t e d m e n t a l a g e of 11 months or m o r e a t a c h r o n o l o g i c a l a g e of 30 months. L o v a a s r e p o r t e d that t h e latter inclusion criterion resulted in 1 5 % of referrals b e i n g e x c l u d e d . Pre-treatment measures c o n c l u d e d that t h e e x p e r i m e n t a l g r o u p a n d c o n t r o l #1 w e r e similar o n all m e a s u r e s a t intake, with t h e e x c e p t i o n of c h r o n o l o g i c a l a g e in w h i c h t h e c o n t r o l subjects w e r e 6 months o l d e r o n a v e r a g e (this w a s later s h o w n t o b e not significant). Assessments w e r e c o n d u c t e d in a b l i n d e d fashion w h e n t h e c h i l d r e n w e r e b e t w e e n 6 a n d 7 years of a g e ( w h e n they w o u l d normally h a v e c o m p l e t e d g r a d e o n e ) . O u t c o m e measures c o n s i s t e d of IQ scores a n d first-grade p l a c e m e n t d a t a . A c h i l d r e c e i v e d a s c o r e of 3 ( a n d w e r e classified as normal functioning) if they a c h i e v e d a n o r m a l IQ s c o r e , h a d c o m p l e t e d 7  g r a d e o n e in a n o r m a l class in a s c h o o l for n o r m a l c h i l d r e n a n d h a d b e e n m o v e d f o r w a r d t o g r a d e t w o . A s c o r e of 2 w a s a s s i g n e d to those c h i l d r e n w h o a t t e n d e d g r a d e o n e in a n aphasia class ( l a n g u a g e d e l a y e d , l a n g u a g e h a n d i c a p p e d or learning d i s a b l e d ) . A n d finally, a s c o r e of 1 w a s g i v e n to c h i l d r e n w h o h a d b e e n p l a c e d in a u t i s t i c / r e t a r d e d classes or if t h e c h i l d ' s IQ s c o r e fell into t h e severely r e t a r d e d r a n g e . L o v a a s r e p o r t e d that a t follow-up t h e e x p e r i m e n t a l g r o u p w a s significantly higher t h a n b o t h c o n t r o l groups o n t h e variables of c l a s s r o o m p l a c e m e n t a n d IQ. O u t of t h e 19 e x p e r i m e n t a l c h i l d r e n , 9 (47%) w e r e r e p o r t e d to h a v e successfully c o m p l e t e d g r a d e o n e in a n o r m a l c l a s s r o o m a n d a d v a n c e d into g r a d e t w o . In a d d i t i o n , these c h i l d r e n a c h i e v e d a n a v e r a g e or a b o v e a v e r a g e s c o r e o n IQ tests (M=107). Eight c h i l d r e n (42%) p a s s e d first g r a d e in a n a p h a s i c c l a s s r o o m with IQ scores within t h e mildly r e t a r d e d r a n g e (M=70). A n d , t w o c h i l d r e n (10%) a t t e n d e d classes for autistic/retarded c h i l d r e n with p r o f o u n d l y r e t a r d e d IQs <30. There w e r e n o d i f f e r e n c e s r e p o r t e d b e t w e e n t h e t w o c o n t r o l groups a t either i n t a k e or follow-up. C o m b i n e d follow-up d a t a from t h e c o n t r o l g r o u p s s h o w e d that only 1 c h i l d (2%) r e a c h e d n o r m a l f u n c t i o n i n g , 18 c h i l d r e n (45%) h a d b e e n t a u g h t in a p h a s i a classes, while 21 subjects (53%) w e r e in classes for autistic/retarded c h i l d r e n . L o v a a s c o n d u c t e d a study within a study w h e n h e tested t h e hypothesis t h a t aversives (shouting " N o " , or a slap o n t h e thigh), in response to self-stimulatory or a g g r e s s i v e a n d n o n c o m p l i a n t b e h a v i o u r , w o u l d p r o d u c e significant c h a n g e s . Four c h i l d r e n from t h e •experimental g r o u p a n d a n o t h e r four from C o n t r o l #1 w e r e initially t r e a t e d without aversives a n d t h e n later, aversives a d d e d to t h e t r e a t m e n t p r o t o c o l . B e h a v i o u r a l o u t c o m e s w e r e m e a s u r e d a n d c o m p a r e d a t b o t h these time points. L o v a a s r e p o r t e d that b o t h groups m a d e " s u d d e n a n d s t a b l e reduction[s] in i n a p p r o p r i a t e behaviours a n d s u d d e n a n d s t a b l e increases in a p p r o p r i a t e b e h a v i o u r s " (p. 7). A d d i t i o n a l findings of t h e study w e r e that pro-fated m e n t a l a g e w a s significantly r e l a t e d to o u t c o m e for b o t h t h e e x p e r i m e n t a l a n d c o n t r o l #1 g r o u p s a n d t h a t a b n o r m a l s p e e c h w a s significantly r e l a t e d to o u t c o m e in c o n t r o l #1. C h r o n o l o g i c a l a g e a t onset of intervention w a s not r e l a t e d to o u t c o m e (which ruled o u t t h e issue of d i f f e r e n c e s in c h r o n o l o g i c a l a g e b e t w e e n g r o u p s a t intake). A n d finally, L o v a a s c l a i m e d it w a s possible to p r e d i c t t h e nine c h i l d r e n that h a d a c h i e v e d n o r m a l f u n c t i o n i n g b a s e d o n a n analysis of eight pre-treatment variables. M c E a c h i n , Smith & L o v a a s , 1993  A two-part follow-up of t h e original c h i l d r e n from Lovaas'' 1987 study w a s p u b l i s h e d in 1993 in t h e American Journal on Mental Retardation.  For. t h e first p a r t of t h e r e s e a r c h t h e  investigators e x a m i n e d w h e t h e r t h e gains m a d e b y t h e e x p e r i m e n t a l g r o u p h a d b e e n m a i n t a i n e d after t r e a t m e n t h a d e n d e d . For the s e c o n d part, t h e nine c h i l d r e n in t h e e x p e r i m e n t a l g r o u p that h a d a c h i e v e d " b e s t o u t c o m e s " w e r e e x a m i n e d for signs of residual  8  autistic symptomatology (as c o m p a r e d to a cohort of children without behavioural problems "non-clinical comparison group"). For McEachin et al.'s study, the mean a g e of the experimental group was now 13 years and the children had been out of treatment for an average of 5 years (range: 0-12 years). More specifically, the group of best outcome children had been without treatment for 5 years on average (range: 3-9 years). In comparison, the mean a g e of the control group was 10 years with a mean time out of treatment of 3 years (range: 0-9 years). The researchers acknowledged that their experimental group was older and had been out of treatment longer than the control group a n d explained that the a g e difference was due to the original treatment assignment procedure. With the Lovaas study, initially all referrals were assigned to the experimental group because therapists were available. However, the authors of McEachin et al. determined statistically that there'was no association between the order in which the children were referred and intake or outcome IQ. Measures obtained for this follow-up study included an assessment of school placement, IQ, the Vineland Adaptive Behaviour Scales, and the Personality Inventory for Children. Then, to compare the best outcome subjects with the non-clinical comparison group, a comprehensive clinical rating scale was developed that captured the typical areas of problems for autistic children. All these tests were administered and scored by blinded assessors for the experimental group, while staff members of the program and outside agencies tested a n d scored the control group. Statistical tests indicated that there was no significant differences between children who had been evaluated by project staff and those evaluated by outside agencies. The authors reported that at follow-up, one of the nine best outcome children in the experimental group had regressed and subsequently p l a c e d in a special education class. However, one of the other ten experimental children (who had not reached best outcome) had in fact improved and was now in a regular class. The remaining experimental children had maintained their school placement. Therefore, the figure of 47% of children in the experimental group attaining normal classroom placement was upheld. In comparison, none of the nineteen children in the control group were in regular classes. In regard to IQ, the experimental group h a d a significantly higher mean IQ than did the control group (30 points higher) prompting the investigators to conclude that the experimental group had maintained its gains in intellectual functioning. In addition, the experimental group showed a higher level of functioning, more adaptive behaviours, and less maladaptive behaviours than the control group. And finally, related to personality functioning, the two groups did not differ on overall scale elevation, however, there were differences between groups on two specific scales - the psychosis a n d the somatic concerns scales - with the control group displaying higher levels of psychosis and lower levels of somatic complaints.  9  Upon contrasting the best outcome children against the non-clinical comparison group, the best outcome subjects had IQs in the high end of the normal range. In addition, most of these children also scored a b o v e average on the Vineland Adaptive Behaviour Scale. However, although there were three best outcomes children that had achieved only marginal scores on some of the Vineland subscales, on average, the group achieved composite scores within the normal range. On the Vineland Maladaptive Behaviour Scale, three children displayed clinically significant maladaptive behaviour, but as a group, the best outcome children did not display clinically significant aberrant behaviour. A n d finally, in regard to personality functioning, some deviations from average were noted on the personality test and the clinical ratings scales for the best outcomes children. However, the authors contributed this finding to the extreme scores of one child as o p p o s e d to problems with the entire group. Although they a c k n o w l e d g e d that group averages were not usually interpreted in this manner, they b a c k e d up their position by stating that statisticians concur that, "there are many times when group averages represent the performance of few or no subjects within the group" (p. 370). In this situation, they attributed this variance almost exclusively to one subject. In sum, eight children (42% of the experimental group) "may be judged to have m a d e major a n d enduring gains and may be described as 'normal-functioning'" (p. 368) as opposed to none of the control group achieving this goal.  10  Critiques of Lovaas & McEachin L o v a a s ' original 1987 r e s e a r c h study, a l o n g with M c E a c h i n et al.'s (1993) follow-up, c o n t i n u e to b e c i t e d a n d c r i t i q u e d within a c a d e m i c , l e g a l , a n d h e a l t h c a r e forums. A l t h o u g h e a c h r e s p e c t i v e discipline possesses their o w n u n i q u e criticisms, this next s e c t i o n will discuss s o m e of t h e m e t h o d o l o g i c a l issues within a n a c a d e m i c c o n t e x t , as this should b e t h e initial step b e f o r e a n y h e a l t h or l e g a l p o l i c y d e c i s i o n is c o n s i d e r e d . Rebuttals b y L o v a a s a n d his p r o p o n e n t s a r e also i n c o r p o r a t e d . Lack of Randomization The most o f t e n c i t e d criticism of L o v a a s ' 1987 study w a s t h e l a c k of r a n d o m i z a t i o n ( G e r n s b a c h e r , 2003; M e s i b o v , 1998; S c h o p l e r , Short & M e s i b o v , 1989). L o v a a s ' subjects w e r e a s s i g n e d to either t h e t r e a t m e n t a r m or o n e of t w o control g r o u p s b a s e d o n t h e availability of Lovaas-trained therapists. This w a s d o n e d u e to " p a r e n t protest a n d e t h i c a l c o n s i d e r a t i o n s " (p. 4). Therefore, L o v a a s d e v e l o p e d a "wait-list" c o n t r o l g r o u p , w h i c h w a s b a s e d o n t h e first-comefirst-served p r i n c i p l e . If staff m e m b e r s w e r e a v a i l a b l e w h e n t h e c h i l d w a s b r o u g h t in, t h e c h i l d w e n t into t h e e x p e r i m e n t a l g r o u p ; if not, the c h i l d w a s a s s i g n e d to a c o n t r o l g r o u p . H o w e v e r , this w a s n o t e n f o r c e d . Patients w e r e n o t a s s i g n e d sequentially; it w a s d e p e n d a n t u p o n t h e therapist d e t e r m i n i n g w h e t h e r they w e r e a b l e to t a k e a n o t h e r c h i l d . A t that point, t h e families h a d a n o p t i o n n o t to p a r t i c i p a t e . L a c k of r a n d o m i z a t i o n b r o u g h t a b o u t c o n c e r n s r e g a r d i n g t h e representativeness a n d c o m p a r a b i l i t y of t h e s a m p l e . For e x a m p l e , a r g u m e n t s w e r e m a d e that there w e r e f e w e r higher f u n c t i o n i n g c h i l d r e n in the control g r o u p s . H o w e v e r , Eikeseth (2001), a r e s e a r c h e r from o n e of the L o v a a s r e p l i c a t i o n sites in N o r w a y , d i s p u t e d this b y c l a i m i n g that t h e e x p e r i m e n t a l g r o u p a n d c o n t r o l g r o u p #1 w e r e similar in r e g a r d to 19 o u t of 20 i m p o r t a n t v a r i a b l e s before t h e t r e a t m e n t w a s a p p l i e d . A n d , a s b r o u g h t u p in t h e Auton l e g a l p r o c e e d i n g s , a s c h o o l of t h o u g h t exists that while q u a s i - r a n d o m assignment c o u l d m a k e t h e t r e a t m e n t a d m i n i s t e r e d to t h e e x p e r i m e n t a l g r o u p look better t h a n it a c t u a l l y w a s , it c o u l d not m a k e a n i n e f f e c t i v e t r e a t m e n t look e f f e c t i v e (Baer, 1993): Inclusion Criteria Prorated Mental A g e S c h o p l e r , Short a n d M e s i b o v (1989) took issue with the use of t h e p r o r a t e d m e n t a l a g e (PMA) as a s e l e c t i o n criterion in d e t e r m i n i n g t h e intellectual f u n c t i o n i n g of t h e c h i l d r e n . (Lovaas utilized t h e Bayley, Binet, a n d Cattrell IQ tests o n 9 0 % of his r e s e a r c h subjects for pre-testing). "To adjust for variation in M A [mental a g e ] scores as a f u n c t i o n of t h e subject's C A [ c h r o n o l o g i c a l a g e ] a t t h e time of test administration, P M A scores w e r e c a l c u l a t e d for a C A a t 30 months ( M A / C A x 30)" (Lovaas, 1987, p. 3). S c h o p l e r a r g u e d that a P M A typically d e p i c t s c h i l d r e n as lower f u n c t i o n i n g t h a n the ratio IQ a n d b y using this criterion s o m e c h i l d r e n , besides t h e p r o f o u n d l y r e t a r d e d , w e r e unnecessarily e x c l u d e d from L o v a a s ' study (15% to b e e x a c t ) . 11  S c h o p l e r p o i n t e d out that L o v a a s ' r e p o r t e d m e a n P M A of 18.8 for his t r e a t m e n t g r o u p translated into a ratio IQ of 63, w h i c h w a s significantly higher t h a n a n y previously r e p o r t e d r a n d o m s a m p l e of autistic c h i l d r e n . J o r d a n , J o n e s , a n d Murray (1998) d e s c r i b e d t h e use of t h e P M A as " p s y c h o m e t r i c a l l y d u b i o u s " (p. 111). H o w e v e r , this c l a i m w a s o n c e a g a i n d i s p u t e d b y Eikeseth (2001) b y e x p l a i n i n g that L o v a a s u s e d ratio scores a t intake a n d d e v i a t i o n scores a t follow-up. This w a s a c o n s e r v a t i v e m e a s u r e as it a p p a r e n t l y c o m p a r e d t h e highest scores a t i n t a k e with t h e lowest scores a t follow-up. Chronological A g e L o v a a s i n c l u d e d c h i l d r e n <40 months if m u t e a n d less t h a n 46 months if t h e y d e m o n s t r a t e d t h e autistic trait of e c h o l a l i a . E c h o l a l i a is r e c o g n i z e d as a c h a r a c t e r i s t i c of c h i l d r e n with a better prognosis (Schopler, et al., 1989). L o v a a s a c k n o w l e d g e d that t h e e c h o l a l i a criterion w a s e m p l o y e d to select a s a m p l e that w o u l d progress m o r e quickly, b u t a s s e r t e d that d a t a analysis s h o w e d n o g r e a t e r i m p r o v e m e n t for e c h o l a l i c c h i l d r e n . Sex Distribution D u e to t h e l a c k of r a n d o m i z a t i o n , m o r e girls e n d e d u p b e i n g e n r o l l e d into o n e of t h e L o v a a s c o n t r o l g r o u p s . This c l a i m of bias w a s b a s e d o n t h e f a c t that f e m a l e s a r e k n o w n to h a v e p o o r e r p r o g n o s e s t h a n males. Eikeseth (2001) a g r e e d that t h e e x p e r i m e n t a l g r o u p might h a v e h a d a better prognosis t h a n the t w o c o n t r o l groups, h o w e v e r , Smith (1997) p o i n t e d o u t that t w o of the three girls in t h e e x p e r i m e n t a l g r o u p a c t u a l l y a c h i e v e d t h e status of best o u t c o m e , thus d e m o n s t r a t i n g that t h e g e n d e r bias criticism w a s not relevant. H o w e v e r , u n e q u a l sex distribution c a n o c c u r e v e n with r a n d o m i z a t i o n , if t h e study is not l a r g e e n o u g h . Delay in Assessment In M c E a c h i n ' s 1993 follow-up study, t h e e x p e r i m e n t a l g r o u p w a s 3-5 years o l d e r t h a n t h e c o n t r o l g r o u p a t final assessment. Therefore, gains m a y h a v e b e e n d u e to a d d i t i o n a l d e v e l o p m e n t a n d e d u c a t i o n . Also, t h e t r e a t m e n t g r o u p h a d b e e n o u t of t h e r a p y longer. H o w e v e r , Eikeseth (2001) a r g u e d this point b y c l a i m i n g that there w a s n o e v i d e n c e that m a t u r a t i o n or n o n - b e h a v i o u r a l e d u c a t i o n p r o d u c e s large gains in individuals with autism. He w e n t o n to suggest that r e l a p s e might o c c u r w h e n b e h a v i o u r a l t r e a t m e n t is w i t h d r a w n . The l e n g t h of t i m e out of t r e a t m e n t c o u l d in f a c t bias t h e study a g a i n s t t h e t r e a t m e n t g r o u p . Measurements Use of Different Measures Before and After Treatment Researchers h a v e also p o i n t e d out t h a t L o v a a s e m p l o y e d different m e a s u r e s b e f o r e a n d after t r e a t m e n t (Howlin, 1997). H o w e v e r , Smith a n d L o v a a s (1997) r e b u t t e d this assertion with the a r g u m e n t that this w a s a c c e p t a b l e p r a c t i c e since n o single m e a s u r e of intellectual f u n c t i o n i n g c o u l d b e v a l i d a n d reliable across a n entire r a n g e of a g e s . In f a c t , L o v a a s (2000) r e s p o n d e d " f e w w o u l d suggest that 3 y e a r olds s h o u l d r e c e i v e t h e s a m e assessment as 13 y e a r o l d s " (p. 32). Adjustments for t h e b a s e l i n e v a r i a b l e c a n b e m a d e utilizing analysis of c o v a r i a n c e . 12  Measures Not Reflective of Important Areas of Difficulties in Autism A n o t h e r criticism, m a d e b y Howlin (1997) a n d J o r d a n e t a l . (1998) w a s t h a t L o v a a s u s e d gross o u t c o m e m e a s u r e s i n s t e a d of key m e a s u r e s of s p e c i f i c autism features. S p e c i f i c a l l y , Howlin n o t e d a p a u c i t y of measures o n s o c i a l i n t e r a c t i o n , friendships, c o n c e p t u a l abilities, s o c i a l c o m m u n i c a t i o n , obsessional a n d ritualistic b e h a v i o u r s , a n d d i s t u r b a n c e s of m o o d . Eikeseth (2001) c o u n t e r e d this c l a i m b y stating that t h e 1993 follow-up study b y M c E a c h i n et a l . c o n t a i n e d 33 o u t c o m e measures, all of w h i c h r e f l e c t e d i m p o r t a n t a r e a s of difficulty in autism. Control Groups J o r d a n et a l . (1998) c o n t e n d e d that L o v a a s ' c o n t r o l g r o u p #2 w a s a n opportunist s a m p l e . H o w e v e r , this w a s d i s p u t e d b y Eikeseth (2001) b y justifying that this g r o u p w a s u s e d to rule o u t r e f e r r a l a n d s e l e c t i o n bias. M e s i b o v (1998) a r g u e d that different cut-off a g e s w e r e u s e d for e c h o l a l i c a n d m u t e c h i l d r e n ; that t h e c o n t r o l g r o u p h a d f e w e r higher f u n c t i o n i n g c h i l d r e n t h a n w o u l d b e e x p e c t e d (typically 20-30% of autistic c h i l d r e n a r e higher functioning); a n d that e a c h c o n t r o l g r o u p r e c e i v e d different testing p r o t o c o l s . H o w e v e r , L o v a a s dismissed t h e c l a i m of f e w e r h i g h f u n c t i o n i n g c h i l d r e n in t h e c o n t r o l g r o u p b y a r g u i n g that, e v e n with all his e x p e r i e n c e , h e c o u l d n o t p r e d i c t w h i c h c h i l d w o u l d s u c c e e d b e c a u s e high f u n c t i o n i n g adults m a y n o t h a v e a p p e a r e d as high f u n c t i o n i n g c h i l d r e n (Johnson, 1994). Treatment Delay in Treatment It w a s n o t e d b y J o r d a n e t a l . (1998) that c o n t r o l g r o u p #1 w a s d e l a y e d in r e c e i v i n g their t r e a t m e n t m a k i n g t h e e x p e r i m e n t a l g r o u p 6 months older t h a n t h e c o n t r o l g r o u p . (This w a s the only v a r i a b l e o u t of 20 assessed that w a s not consistent b e t w e e n t h e groups). Eikeseth (2001) a g r e e d with these findings, but a r g u e d that L o v a a s d i d not find a relationship b e t w e e n a g e a t i n t a k e a n d t r e a t m e n t o u t c o m e w h e n t h e best o u t c o m e c h i l d r e n w e r e c o m p a r e d to those c h i l d r e n in t h e study w h o d i d not a c h i e v e n o r m a l i n t e l l e c t u a l a n d a c a d e m i c f u n c t i o n i n g . D u e to the y o u n g s a m p l e (M=35 months), a g e a t intake m a y not h a v e b e e n a n influential v a r i a b l e . H o w e v e r , it d o e s n o t n e g a t e t h e f a c t that it m a y still b e a n i m p o r t a n t v a r i a b l e for future studies. Timing of Initiation of Treatment While intuitively it m a k e s sense that the earlier t r e a t m e n t is initiated t h e b e t t e r t h e prognosis for a n autistic c h i l d , Howlin (in 2003) p o i n t e d out that in f a c t there w a s n o r e s e a r c h that s u b s t a n t i a t e d this a s s u m p t i o n . L o v a a s a d v o c a t e d t r e a t m e n t b e f o r e t h e a g e of four, while the Autism S o c i e t y of A m e r i c a (1998) states, " A l t h o u g h n o t c o n f i r m e d b y r e s e a r c h , it is believed [italics a d d e d ] that t h e best a g e to b e g i n intensive A B A t h e r a p y is b e t w e e n 24-42 months or b e f o r e 3 V2 y e a r of a g e " (p. 4). While r e s e a r c h has d e m o n s t r a t e d i m p r o v e m e n t s in c h i l d r e n w h e n intervention p r o g r a m s a r e initiated b e f o r e t h e a g e of four, they h a d f a i l e d to i n c l u d e a systematic c o m p a r i s o n with c h i l d r e n of other a g e s . C o n v e r s e l y , there w a s n o e v i d e n c e to support t h e hypothesis that d e l a y e d initiation of t r e a t m e n t w o u l d b e of little benefit. Instead, t h e '13  belief w a s " b e t t e r late t h a n n e v e r " as o p p o s e d to "early intervention or n o t h i n g " (p. 256). Since this time, a d d i t i o n a l r e s e a r c h has b e e n c o n d u c t e d w h i c h r e p o r t e d gains for 4-7 y e a r olds after o n e y e a r of L o v a a s t r e a t m e n t (Eikeseth et a l . , 2002). Treatment Fidelity/Integrity Ensuring that a t r e a t m e n t is i m p l e m e n t e d as it w a s originally c o n c e p t u a l i z e d is a n issue that is n o t only r e l e v a n t to L o v a a s t h e r a p y b u t h a s p l a g u e d researchers in t h e fields of psychiatry, p s y c h o l o g y a n d e d u c a t i o n for years. M e a s u r e m e n t s of t r e a t m e n t integrity w e r e not c o m m o n w h e n L o v a a s c o n d u c t e d his study. H o w e v e r , claims a g a i n s t t h e integrity of L o v a a s ' p r o g r a m (Jordan, et al., 1998) w e r e d i s p u t e d b y Eikeseth (2001) w h o a r g u e d that, a l t h o u g h formal t r e a t m e n t integrity w a s not m o n i t o r e d , s p e c i f i c measures w e r e t a k e n . These i n c l u d e d t h e e s t a b l i s h m e n t of t r e a t m e n t protocols a n d m a n u a l s , w e e k l y clinic m e e t i n g s (with t e a c h i n g demonstrations), monthly g r a n d rounds, a n d use of individual l o g b o o k s , d a t a sheets a n d written reports. Treatment Intensity J o r d a n e t a l . (1998) s u g g e s t e d that t h e o u t c o m e s of L o v a a s ' study m i g h t b e d u e to t h e intensity of t h e p r o g r a m as o p p o s e d to t h e a c t u a l t r e a t m e n t p r o v i d e d . H o w e v e r , this w a s later d i s p u t e d b y Eikeseth, Smith, J a h r a n d Elde.vik (2002) w h o c o m p a r e d t h e effects of 28 hours p e r w e e k of b e h a v i o u r a l t r e a t m e n t to 29 hours p e r w e e k of e c l e c t i c s p e c i a l e d u c a t i o n t r e a t m e n t for 4-7 y e a r olds. As previously d i s c u s s e d , the b e h a v i o u r a l l y t r e a t e d c h i l d r e n a p p e a r e d to m a k e m o r e progress o n measures of i n t e l l e c t u a l , l a n g u a g e a n d a d a p t i v e f u n c t i o n i n g after o n e y e a r of treatment. L o v a a s a d v o c a t e d t h e i m p o r t a n c e of 40 hours p e r w e e k of t h e r a p y b a s e d o n t h e f a c t that " t h e r e a r e n o d a t a t o support that a n intervention of less t h a n 40 hours p e r w e e k will result in 4 7 % rate of n o r m a l f u n c t i o n i n g " (Lovaas, 2000, p. 30). H o w e v e r , a t a c o n f e r e n c e of t h e Autism S o c i e t y of C o n n e c t i c u t in 1998, Dr. J o h n M c E a c h i n r e c o g n i z e d t h e barriers f a c e d b y m a n y parents trying to a c c e s s LAT. His position w a s that there w a s n o " a l l or n o t h i n g " a b o u t t h e p r o g r a m a n d if parents c o u l d o b t a i n 25 hours p e r w e e k that w o u l d b e sufficient (Hultgren, 1998). Use of Aversion Therapy O n e of t h e most c o n t e n t i o u s issues surrounding L o v a a s ' earlier work w a s t h e use of aversives. S i n c e these m e t h o d s a r e n o l o n g e r u s e d , o n e a r g u m e n t is t h a t it invalidates t h e results of L o v a a s ' 1987 study (Jordan e t al., 1998). Eikeseth (2001) d i s a g r e e d a n d c o n c l u d e d that while it w o u l d m a k e it very difficult to r e p l i c a t e a n d c o m p a r e studies, t h e results r e m a i n v a l i d . Outcomes Claims of Recovery or Cure M u c h c o n t r o v e r s y has also c e n t e r e d o n L o v a a s ' c l a i m of a c h i e v i n g " n o r m a l intellectual a n d e d u c a t i o n a l f u n c t i o n i n g " in 4 7 % of t h e e x p e r i m e n t a l g r o u p (Lovaas, 1987, p. 7). A l t h o u g h L o v a a s w a s c o g n i z a n t of t h e d e b a t e a b o u t w h e t h e r or n o t normal functioning e q u a t e d to 14  r e c o v e r y from autism, h e still refers to his best o u t c o m e subjects as recovered. the line, h o w e v e r , recovered  Somewhere along  has b e e n translated into cured. L o v a a s has p u b l i c l y r e j e c t e d t h e  c l a i m s of a " c u r e " b y stating "I d o n ' t c l a i m a c u r e b e c a u s e w e h a v e n ' t g o t t e n to t h e o r g a n i c v a r i a b l e that is c a u s i n g a u t i s m " (Johnson, 1994, p. 9). S c h o p l e r , Short a n d M e s i b o v (1989) j o i n e d this a r g u m e n t w h e n t h e y p o i n t e d out that t h e L o v a a s study f a i l e d to use t y p i c a l s o c i a l , b e h a v i o u r a l a n d c o m m u n i c a t i o n o u t c o m e measures to support t h e hypothesis of a t t a i n i n g normal functioning.  They c o n t e n d e d that w h e n IQ measures  a n d progress in s c h o o l a r e u s e d a l o n e , they a r e p o o r indicators of t r e a t m e n t e f f i c a c y . S c h o o l p l a c e m e n t s m a y h a v e m o r e to d o with administrative policies surrounding s p e c i a l - n e e d s c h i l d r e n . In a d d i t i o n , i m p r o v e m e n t s in IQ scores m a y b e d u e to i m p r o v e d c o m p l i a n c e rather t h a n in c o g n i t i v e f u n c t i o n i n g . They took issue with L o v a a s ' s t a t e m e n t that " t h e r e c o v e r e d c h i l d r e n s h o w n o p e r m a n e n t . . . b e h a v i o u r a l deficits a n d their l a n g u a g e a p p e a r s to b e n o r m a l " (Lovaas, 1987, p. 8) as t h e c l a i m w a s u n s u p p o r t e d b y d a t a . M e s i b o v (1998) also p o i n t e d o u t that t h e r e a r e m a n y high-functioning autistic p e o p l e with near-normal IQ's a t t e n d i n g regular p u b l i c schools w h o w o u l d still b e c o n s i d e r e d severely h a n d i c a p p e d . Settings L o v a a s autism t r e a t m e n t , a s originally c o n c e p t u a l i z e d , w a s d e l i v e r e d in a structured c l i n i c a l setting with daily therapist supervision. S i n c e t h e n , i n c r e a s e d d e m a n d for LAT has f o r c e d the L o v a a s Institute to d e s i g n w o r k s h o p - b a s e d services that c a n b e transferred into c o m m u n i t y a n d h o m e settings. L o v a a s w a r n e d , h o w e v e r , that these w o r k s h o p - b a s e d t r e a t m e n t p r o g r a m s h a d very different o u t c o m e s , a n d e s t i m a t e d that d a t a d o c u m e n t i n g n o r m a l f u n c t i o n i n g in these settings w o u l d only b e a b o u t 20 p e r c e n t (Lovaas, 2000). L o v a a s s u g g e s t e d this w a s d u e to factors s u c h as high staff turnover, less f r e q u e n t supervision, lower t r e a t m e n t intensity, a n d utilizing therapists w h o h a d less a c a d e m i c p r e p a r a t i o n in l e a r n i n g - b a s e d theory a n d r e s e a r c h . A n e v e n g r e a t e r c o n c e r n w a s t h a t / s h o u l d these w o r k s h o p - b a s e d services b e p r o v i d e d b y therapists n o t t r a i n e d b y U C L A , t r e a t m e n t e f f i c a c y w o u l d d r o p to less t h a n 1 0 % . Therapists Parents s e e k i n g b e h a v i o u r a l therapists to administer L o v a a s t h e r a p y a r e v u l n e r a b l e to the various c l a i m s of expertise m a d e b y these practitioners. L o v a a s w a s a d a m a n t that only UCLA-trained therapists w e r e q u a l i f i e d to deliver L o v a a s autism t r e a t m e n t (Lovaas, 2000). L o v a a s therapists h a d t o h a v e a master's d e g r e e b e f o r e t h e y w e r e c o n s i d e r e d for a 9-month internship that c o n s i s t e d of 30 hours p e r w e e k of training. H o w e v e r , critics felt that others c o u l d b e t r a i n e d in t h e t e c h n i q u e s of d i s c re te trial training (DTT) (Donnelly, 1996). O f interest is t h a t L o v a a s ' p e r s p e c t i v e o n b e h a v i o u r a l training a p p e a r s t o h a v e c h a n g e d o v e r the years. In a n interview p u b l i s h e d i n T h e A d v o c a t e , L o v a a s e s p o u s e d t h e virtues of b e i n g a b l e to hire a n d train volunteers stating that, " m a n y p e o p l e c a n d o this without years of e x p e n s i v e t r a i n i n g " (Johnson, 1994, p. 20). In f a c t , h e p r o m o t e d the t w o - d a y U C L A w o r k s h o p (at 15  a cost of $1,400) followed by a second workshop two months later (for $600 or $700). Yet, in 2000 while refuting some of the misunderstandings surrounding the UCLA Young Autism Project, Lovaas stated, "reading the teaching manual, attending a workshop led by UCLA certified consultants, practicing behavioural therapy on several families or spending a short time at the UCLA affiliated site, does, not make a person qualified to provide UCLA based treatment" (Lovaas, 2000, p. 30). Costs  With the lack of empirical guidance on the most effective intensity of treatment, LAT expenses c a n fluctuate dramatically. Lovaas estimated the cost of treatment at $60,000 USD per year, or $120,000 for the recommended two years of treatment to achieve "normal functioning", at which point the best-outcome children would not require any additional treatment. He contrasted this against an estimate of more than two million dollars for life-long protective care (Lovaas, 2000). Appropriateness For All Autistic Children  Lovaas determined that his therapy, which is language-based, does not work on children who are visual learners. In fact, his research focus has shifted towards this group of children in order to understand how they learn. "Skill in auditory matching" was the only predictor of success at the e n d of three months (e.g., whether the children c a n imitate sounds like words) (Johnson, 1994, p. 19). Those that a p p e a r e d to benefit the most from LAT were nonverbal a n d non-compliant (Donnelly, 1996, p. 6).  16  British Columbia Autism Intervention Programs Historically, t h e g o v e r n m e n t of British C o l u m b i a u s e d to offer a m y r i a d of services for. autistic c h i l d r e n s u c h as respite, h o m e support services, c h i l d c a r e , p h y s i c a l a n d o c c u p a t i o n a l t h e r a p y , s p e e c h / l a n g u a g e t h e r a p y , h e a r i n g services, a n d b e h a v i o u r a l support. H o w e v e r , t h e f o c u s of these p r o g r a m s w a s o n supportive c a r e as o p p o s e d to t h e r a p e u t i c services. Therefore, in 1995, families of autistic c h i l d r e n b e g a n a letter-writing c a m p a i g n in a n a t t e m p t to l o b b y t h e g o v e r n m e n t for L o v a a s Autism Treatment. By 1996 t h e parents h a d c o l l e c t e d t h e n a m e s of sixtythree psychiatrists o n a petition in support of L o v a a s a n d b y 1998 o v e r e i g h t t h o u s a n d citizens h a d s i g n e d a petition urging t h e P r o v i n c e to f u n d e f f e c t i v e autism t r e a t m e n t . H o w e v e r , in response, t h e g o v e r n m e n t p l a c e d a m o r a t o r i u m o n a n y further autism t h e r a p i e s ; this a c t i o n p r e c i p i t a t e d t h e Auton l e g a l p r o c e e d i n g s (to b e d e s c r i b e d in a later section). In M a y 1999, o n e y e a r after t h e Auton c a s e h a d c o m m e n c e d , t h e B C Ministry of C h i l d r e n a n d Families a n d t h e Ministry of E d u c a t i o n l a u n c h e d its Autism Action Plan a n d t h e Autism Action Implementation  Plan to a d d r e s s c o n c e r n s e x p r e s s e d b y t h e p u b l i c in r e g a r d to autism  services for c h i l d r e n , youth a n d their families. This p l a n w a s c o n c e p t u a l i z e d after c o n s u l t a t i o n with parents, service providers, c o m m u n i t y a d v o c a t e s a n d g o v e r n m e n t staff. The p l a n w a s g e n e r i c in that it p r o v i d e d "early intervention a n d t r e a t m e n t " ; it d i d not s p e c i f i c a l l y outline a p r o g r a m of early intensive b e h a v i o u r a l intervention. H o w e v e r , i m p l e m e n t a t i o n w a s h a m p e r e d b y b o t h f u n d i n g constraints a n d t h e equity v i e w p o i n t that autistic p r o g r a m s h a d to b e b a l a n c e d a g a i n s t services to other s p e c i a l n e e d s c h i l d r e n . In M a r c h of 2001, in response to t h e Auton B C S u p r e m e C o u r t ruling (July 2000), a n interMinisterial c o m m i t t e e d e s i g n e d t h e Provincial Centre for Autism and Related Disorders p r o g r a m (P-CARD). The Early Intensive B e h a v i o u r a l Intervention (EIBI) initiative for c h i l d r e n u n d e r t h e a g e of 6 started in M a y 2001 a n d e n t a i l e d c o n t r a c t i n g three c h i l d d e v e l o p m e n t c e n t r e s l o c a t e d in Ladner, t h e T h o m p s o n O k a n o g a n r e g i o n , a n d V i c t o r i a , to p r o v i d e t h e first official EIBI p r o g r a m in the P r o v i n c e . This p r o g r a m o f f e r e d EIBI for 20 hours p e r w e e k o n a 1:1 basis in a d d i t i o n to s p e e c h - l a n g u a g e a n d o c c u p a t i o n a l t h e r a p y . E a c h p r o g r a m h a d opportunities for t h e c h i l d r e n to i n t e g r a t e with t y p i c a l peers, i n v o l v e d parents in t h e training a n d intervention, a n d utilized only positive b e h a v i o u r a l r e i n f o r c e m e n t to h a n d l e b e h a v i o u r a l p r o b l e m s ( M i r e n d a , 2005). In total, 75 c h i l d r e n w e r e e n r o l l e d in these centres. A c o m p o n e n t of t h e p r o g r a m w a s t o i n c l u d e training of a d d i t i o n a l EIBI therapists in a d d i t i o n to a n e v a l u a t i o n project to m e a s u r e t h e i m p a c t of t h e t h e r a p y o n t h e c h i l d r e n , their families a n d t h e c o m m u n i t y . In M a y 2002, i n s t e a d of e x p a n d i n g t h e EIBI p r o g r a m , t h e Ministry of C h i l d r e n a n d Family D e v e l o p m e n t (MCFD) initiated a n interim early intensive intervention (IEII) f u n d i n g o p t i o n for autism t r e a t m e n t (the p r o g r a m n a m e has subsequently c h a n g e d to: Autism Funding: Under Age 6). U n d e r this p r o g r a m , families of c h i l d r e n with ASD u n d e r t h e a g e of six a r e eligible to r e c e i v e a m a x i m u m of $20,000 p e r y e a r for autism interventions, training, a n d e q u i p m e n t . H o w e v e r , this is a 17  p a r e n t - a d m i n i s t e r e d p r o g r a m that requires families to a s s u m e a r a n g e of c l i n i c a l a n d administrative responsibilities for their children's b e h a v i o u r a l t r e a t m e n t p r o g r a m s . Therefore, they must e n t e r into f o r m a l f u n d i n g a g r e e m e n t s with the g o v e r n m e n t . C l i n i c a l responsibilities i n c l u d e s e l e c t i o n of a b e h a v i o u r a l therapist, a n d in c o n s u l t a t i o n , d e v e l o p m e n t of a b e h a v i o u r a l p l a n of intervention. In r e g a r d to the administrative responsibilities, there are t w o options for the I Ell p r o g r a m . The first is the invoice payment option w h e r e b y the family a p p l i e s to the M C F D for a billing n u m b e r so that treatments c a n b e i n v o i c e d directly to the g o v e r n m e n t . The s e c o n d o p t i o n is the direct funding option w h e r e the family sets u p a trust a c c o u n t for the c h i l d a n d the M C F D deposits funds into the a c c o u n t o n a monthly basis. Both these options require d e t a i l e d r e c o r d k e e p i n g a n d a c c o u n t i n g p r o c e d u r e s to verify services r e c e i v e d . In a d d i t i o n , the b e h a v i o u r a l therapists b e c o m e e m p l o y e e s of the families, thus n e c e s s i t a t i n g full payroll responsibilities s u c h as the requisite submission of e m p l o y m e n t i n s u r a n c e p r e m i u m s , taxes, a n d Work S a f e B C contributions. A l t h o u g h administrating the IEII p r o g r a m c a n b e c h a l l e n g i n g for s o m e families, the benefit is that the parents h a v e the o p t i o n of c h o o s i n g a n d c u s t o m i z i n g a p r o g r a m that is s p e c i f i c to their c h i l d ' s n e e d s . H o w e v e r , to b e eligible for f u n d i n g , the therapists must b e s e l e c t e d from a list of provincially a p p r o v e d service providers. This list is m a i n t a i n e d by a third party p r o v i d e r - Autism C o m m u n i t y Training (ACT) - w h i c h also provides i n f o r m a t i o n , training a n d support services to these families. The autism f u n d i n g p r o g r a m w a s further e x p a n d e d in April 2003 to i n c l u d e s c h o o l - a g e d c h i l d r e n (initially c a l l e d the Extended Autism Intervention Funding (EAI) p r o g r a m a n d t h e n c h a n g e d to Autism Funding: Ages 6-18). Four Ministries are responsible for c o l l a b o r a t i n g o n this p r o g r a m : (a) Health Services/Health P l a n n i n g (for diagnosis a n d assessment); (b) C h i l d r e n a n d Family D e v e l o p m e n t (intervention funding); (c) E d u c a t i o n ( e d u c a t i o n p r o g r a m s ) ; a n d , (d) the o v e r a r c h i n g Provincial Health Services Authority. For c h i l d r e n 6-18 years, diagnosis d o e s not h a v e to b e e s t a b l i s h e d b y a multi-disciplinary t e a m (unlike the u n d e r 6 y e a r olds). A g a i n , the family is free to c h o o s e the t y p e of b e h a v i o u r a l t r e a t m e n t as l o n g as it is a d m i n i s t e r e d b y a n a p p r o v e d service p r o v i d e r a n d is b a s e d o n the child'