Translating diverse Translating diverse research research

into useful practiceinto useful practice

Richard Mills Richard Mills The National Autistic SocietyThe National Autistic Society

Making sense of research

issues in the evaluation of interventions in autism

Autistic spectrum

• Diverse behaviours, heterogeneous population

• Differ in aetiology and outcome.

• Changing rates of prevalence

Interventions

• Conflicting theory and reports of efficacy

• Exaggerated or false claims

• Fads and fashions

• Little reliable independent evaluation

Background

….influence of ideas….

….key events

1940’s Kanner • acknowledged “innate”, biological factors• noted upper class bias

Asperger

• described “affective disturbance at biological level”

“constitutional causes, genetic transmission”

1950’s

van Krevelen , Cameron

• Biological cause • Variant of childhood schizophrenia• Interventions based on those for schizophrenia

Little differentiation

1960’s

In UK

• Disability services led by health - most provision in institutions• Children excluded from state education - First Autism school

Creak

• Diagnostic framework “the 9 points”• “Schizophrenic syndrome in childhood”

Bettleheim • “Psychogenic” - “refrigerator” parent.• Advocated “Parentectomy”

1960’s

Rimland

• “Neural” causes – biomedical approaches

Schopler

• Debunks Bettleheim

• Advocates structured, environmental and individualised approaches

Lovaas

• “Behavioural syndrome”

• Operant approaches

Kolvin

• Differentiates autism and childhood psychosis

1970’s

In UK “mentally handicapped” children become eligible for educationFirst specialist autism services for adults

Rutter and Folstein • Genetic influences • advocates cognitive strategies

Lovaas• Young Autism Project at UCLA

Schopler and Mesibov• Linking research and practice - Division TEACCH

1970’s

Bartak and Rutter • Structured teaching – evaluation showed more effective than

psychotherapeutic and permissive approaches

Wing and Gould • Epidemiological study – Autism as a “continuum”

1980’s

In UK - Closure of long stay institutions and growth ofCommunity services – the need for new technologies

Emerson, McGill et al • Concern about anti psychotic medications • Behavioural interventions in community settings

Wing• The closure of Darenth Park

Lavigne et al, Durand, Carr, et al • Communication based interventions

Mesibov• TEACCH introduced into UK

1980’s

DSM III • Classification - “pervasive developmental disorder”

Wing• Broadening of the concept - Term Asperger syndrome introduced

Leslie, Frith, Baron Cohen • Introduction of cognitive models

Reicheld • Biological explanations - dietary interventions

Courchesne• Specific brain lesions and functions implicated

1990’s

Explosion in awarenessGrowth and re emergence of various therapiesMore focus on “more able” individuals

Gillberg• Identification of specific organic and co occurring conditions• Revision of prevalence rates

Frith, Baron Cohen et al Jordan et al , Ozannof et al, Hadwin et al • Development of cognitive theories and approaches• practical application in education and treatment• No effect on core deficits

1990’s

Frith, Baron Cohen et al, Dewey, Jordan et al , Ozannof et al,Hadwin et al • Development of cognitive theories and approaches• Recognition of specific autism thinking styles and effects on

behaviour and learning• Practical application in education and social intervention• No effect on core deficits

Jordan and Jones• Difficulties of accurate evaluation highlighted

Understanding autism

Where are we now?

• Consensus a spectrum of biological / developmental conditions

• public concern - MMR!

• “Cause and cure”

• No agreement on causes or treatment

• Key areas under researched

Few individuals have well-defined “disease entity”

• Diagnostic confusion/lack of clarity

• Complex brain differences and genetic factors

• Unknown environmental factors

• Ethical and political issues – “different not disordered” Continued broadening and refining of diagnostic criteria

Rhetoric led policy – not tested – e.g inclusion

Helpful interventions –

Where are we now ?

Howlin [2003]

• Little known about long term effects• Variable presentations and responses• Promising approaches based on structure behavioural and cognitive interventions

Personal accounts of autism e.g

• Grandin, Williams, Kaufman, Lawson, Tito etc

Martin et all [1999], APANA [2002]

• Concerns about use of drugs

MRC [2003] “Valuing People” [2001]

• Call for “evidence – based” practice

Charman and Clare [2004]

• “Mapping Autism Research” • Significant weaknesses in research of interventions

NAS• Biomedical interventions a priority of parents• Need for more sensitive instruments for evaluation• Key importance of knowledgeable professionals to outcomes

Current position on research?

global research activity from ISI * – topic areas

0%

10%

20%

30%

40%

50%

60%

causes + aetioogyepidemiologydiagnosis + assessmentsymptomsinterventionsfamily + services

Charman and Clare 2004* Institute for Scientific Information

global research activity from ISI – country of origin

0%

10%

20%

30%

40%

50%

60% UK

Europe other

North America

South & CentralAmericaAustralia

Asia

Africa

Middle East

Charman and Clare 2004

comparison of UK vs. non-UK topic areas

0%10%20%30%40%50%60%70%

UKnon-UK

Charman and Clare 2004

• Not specific about purpose

• Fail to reflect complexity of condition

• Reliability and validity of measures

• Treatment fidelity

• “Several interventions used at the same time

Particular challenges for evaluating interventions in autism

What do we mean by useful?

Priorities for intervention ?

Whose?

Person with autism

Parents and carers

Professionals

Public agencies

Government

comparison of current activity (ISI) vs. researcher priorities vs. parent priorities

0%

10%

20%

30%

40%

50%

60%

causes +aetiology

symptoms interventions other

ISI researcher priorities parent priorities

Charman and Clare 2004

priorities in causes + aetiology research: ISI vs. researcher priorities vs. parent priorities

0%

10%

20%

30%

40%

50%

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70%

genetic causes environmental causes

ISI researcher priorities parent priorities

Charman and Clare 2004

priorities in intervention research: ISI vs. researcher priorities vs. parent priorities

0%

10%

20%

30%

40%

50%

60%

70%

psychoeducational psychopharmacological biomedical

ISI researcher priorities parent priorities

Charman and Clare 2004

“target” for intervention

“target” for intervention

• Primary or Core features? • Specific cognitive or behavioural features?

• Co occuring or secondary conditions?

• Barriers to quality of life?

Evidence based practice ?

Making it add up!

National Autistic SocietySimple model for evidence based practice

Assessment / diagnosis

Intervention

improved

no change

worse

Evaluateoutcomes

Specify •Targets •Inputs•methods Describe•Proposed outcomes

Short term

Med term

Long term

Review and record

Ack. Lenton [2002]

Decide what to measure and how to measure it

Specify Subject

characteristics

Intervention hypothesis

Specify / describeintervention

characteristics

Approaches and interventions in autism

Claims and evidence

Interventions claiming cure or recovery

- few independent studiesInclude

• Psychoanalysis

• Specific biomedical

• Doman Delacato

• ARM

• AIT

• Holding Therapy

• ABA [Lovaas]

• Option [Son-Rise]

• Dolphins

Interventions claiming symptomatic improvement

positive accounts but limited studies long term specific studies needed

Include• Specific pharmacological e.g.

Respiridone-SSRI’s• Specific biomedical – [e.g. diets-

vitamins-supplements]• Teacch• Music therapy• Cognitive behaviour therapy• Sensory integration therapy• Floor time therapy• Irlen Lenses• Mediated learning• Specific language and

communication approaches [e.g. Hanen-EarlyBird]

Interventions claiming recovery or significant symptomatic improvement

- not supported

Include• Facilitated Communication

[FC]• Specific biomedical e.g.

Secretin -

Amino Acid therapy -

Dimethylglycine [DMG]• Specific

psychopharmacological e.g.Fenfluramine, Melleril

Interventions claiming symptomatic improvement

- inconclusive evaluation- more studies indicated

Include• Structured ecological and behavioural approaches

e.g. TEACCH• Specific structured behavioural approaches

e.g. Functional analysis• Communication based approaches

e.g. PECS• Structured cognitive approaches

e.g. Social Stories

Interventions claiming significant symptomatic improvement- supported by scientific evaluation

Include• Structured teaching

Reflections on research

Charman and Clare 2004

• level of research activity in the UK is strong - but emphasis ?

• parents and researchers agree that research into causes and interventions are a priority

– but they disagree on specific priority areas

• research into families and services largely overlooked

• Little co ordination of research activity

• Few approaches evaluated by proper trials

Summary Conclusions from research

Positive outcomes associated with :-

Systematic structured behavioural approaches- build on strengths

Focus on autism specific features and underlying cognitive and sensory issues –

The use of natural reinforcers / naturalistic settings.

Social effectiveness – contact with normal developing peers

Functional analysis and communication based interventions

Predictability and consistency

Modification of environmental setting

Engagement of parents / care givers

Howlin [2000]

Note• No shortage of choice but little quality control - few

independent studies support claims for “cure” or “recovery”

• Intensive, early structured behavioural intervention associated with better outcomes

• No one approach – combination of approaches may be needed

• Variable response to interventions - even with broadly similar individuals

• Parents and individuals vulnerable to quackery

No “drug for autism” but some medications and biomedical

interventions useful on a case-by-case basis

but concerns over long term use of drugs and vitamins

More information needed on diets and supplements – specific treatment of identified conditions – alleviating co occurring problems - improving overall health

Looking forward

Considerations for a strategy for research into practice

Understanding specific brain function and implications for intervention

Systematic diagnosis of autistic disorder, subgroups and co morbidities

Recognition that autism is complex- Sophisticated models for refining evaluation needed

Systematic description of intervention and conditions

Evaluation to be embedded within models of good practice - not an afterthought Develop user friendly systems for data collection and analysis

Research to be collaborative and inclusive – shared agendas

Higher priority for research into interventions, families and services, including,

Practical measures to improve communication, quality of life and opportunity- reduction of challenging behaviour

Psycho educational [e.g. structured and cognitive behavioural approaches, ecological and sensory approaches]

Biomedical [e.g. specific diets- supplements and vitamins]

Psychopharmacological- uses and abuses of medication

New approaches - utilise new thinking e.g. EMB theory - set within scientific frameworks

In addition, • Systems to identify moderating and mediating variables [what works for whom]

• Develop rapid response system for promising leads

• Ethical application

• Remember – It’s human beings that make the difference.

“After our son Shaun was diagnosed we would literally try everything we could lay our hands on that promised to help.

We followed up leads from the internet and the press and it seemed that many of the professionals were as much in the dark as we were.!

We now know that many of the things on offer were a waste of time - Some little more than “snake oil”

Alex

Last word from Alex Shaun’s Dad

FINALLY

MMR !

Thank you for your

attention