An Hour of Autism:

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An Hour of Autism Diagnosis, Treatment, What we
do and dont know
Jennifer Bogin, M.S.ed, BCBA Director Division of
Autism Spectrum Services
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Today we will talk about

• Defining ASD
• Core Symptoms/ Co-occurring Disorders
• Identification of ASD
• New Numbers/Prevalence
• DSM-5
• Treatment of ASD
• Applied Behavior Analysis (ABA)
• Relationship-Based Methods
• Anything else??????

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DefiningAutism Spectrum Disorder
1943 Leo Kanner Infantile autism 1944 Hans
Asperger 1960s Separation from
schizophrenia 1970s Biology / genetic
underpinnings 1980 DSM-III Pervasive
Developmental Disorders 1987 DSM-III-R -
Autistic Disorder / PDD-NOS 1994 DSM-IV
Aspergers Disorder 2013- DSM-5- Autism Spectrum
Disorder
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Jenns Recipe for Autism Eruption

• The Nature of the Disability (if one considers it
  a disability)
• Actual increase in incidence
• Increased identification
• Better treatments Hope
• Insurance coverage (for hope)
• The Jenny McCarthy, Doug Flutie, factor
• Trending now.

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So of course its controversial..

• We can (kind of) define who has it
• We have (almost) no idea what causes it
• We dont know IF it is increasing
• IF it is then we dont know why
• We can make it better (if you consider it a
  problem)

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The nature of Autism Spectrum Disorder

• Stayed tuned for more on DSM-5 later!

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Core Symptom DomainsPLUS Associated Medical
Features
Epilepsy- EEG abnormalities
Gastro-intestinal Dysfunction
Aggression
Social Impairment
AUTISM SPECTRUM DISORDERS
ADHD
Sleep Disturbance
Social Anxiety
Immune Dysfunction
Speech/ Communication Deficits
Motor problems Apraxia
Restricted Interests
OCD
Intellectual Disabilities
Obsessive Compulsive Disorder
Language Disorders
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Autism Spectrum Disorders (ASD)
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First lets look at Identification

• We were pretty good at picking up this guy
  (Early Onset)
• But now were picking up this one. (Regression)
• What are the implications?

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Hot of the press

• (March 27, 2014) Today, the Centers for Disease
  Control and Prevention (CDC) released new data on
  the prevalence of autism in the United States.
  This surveillance study identified 1 in 68
  children (1 in 42 boys and 1 in 189 girls) as
  having autism spectrum disorder (ASD).  

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PrevalenceWhat once was rare

• Old estimate for autism
• 1/2500 (1985)
• Recent estimates for autism
• 1/500 (1995)
• Newest estimates for ASD
• 1/150 (CDC, 2002)
• 1/110 (CDC, 2006)
• 1/88 (CDC, 2008)
• NOW- 1/68 (CDC, 2010)

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Why are numbers increasing Better tools?

• New diagnostic measures
• Autism Diagnostic Interview (1989, 1994)
• Autism Diagnostic Observation Schedule (1989,
  2000)
• Screening tools/algorithms/instruments in wide
  use
• MCHAT / AAP guidelines
• SCQ
• SRS

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Why are numbers increasing Lots of reasons?

• Diagnostic changes
• Categories
• Broadening
• Better tools and identification process
• Awareness
• Mental health providers, pediatricians, schools
• Media, parents
• Other factors
• Previous underestimates
• Methodology for obtaining epidemiological data
• What else???

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DSM-5

• Distinctions can be difficult both within the
  spectrum and across other disorders

Autistic D/O
Aspergers
PDD-NOS
Autism Spectrum Disorder
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DSM-5

• Deficits in social communication (all 3)
• Deficits in nonverbal communication
• Deficits in social and emotional reciprocity
• Deficits in maintaining relationships
• Restricted, repetitive patterns of behavior,
  interest, and activities (2)
• Stereotyped motor or verbal behavior
• Unusual sensory behavior
• Excessive adherence to routines and ritualized
  bhx
• Restricted, fixated interests
• Symptoms present in early childhood (manifest
  when social demands exceed capabilities)

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Neurodevelopmental Underpinnings

• Core and associated vulnerabilities
• likely have complex neurogenetic
• origins
• Evidence
• Maleness (31 to 41)
• Familial loading/risk
• MZ twins 58-96
• DZ twins 0-31
• Sibs 5-20
• (18.7 - Ozonoff et al., Pediatrics, 2011)
• 1 - Population

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299.00 Autism Spectrum Disorder

• A. Persistent  deficits  in  social
   communication  and  social  interaction   across
   multiple  contexts,  as  manifested  by  the
   following,  currently   or  by  history
   (examples  are  illustrative,  not  exhaustive
   see  text)  
• 1.  Deficits  in  social--emotional
   reciprocity,  ranging,  for  example,  from  
  abnormal  social  approach  and  failure  of
   normal  back--and--forth   conversation  to
   reduced  sharing  of  interests,  emotions,  or
   affect   to  failure  to  initiate  or  respond
   to  social  interactions.    
• 2.  Deficits  in  nonverbal  communicative
   behaviors  used  for  social   interaction,
   ranging,  for  example,  from  poorly
   integrated--  verbal   and  nonverbal
   communication  to  abnormalities  in  eye
   contact  and   body--language  or  deficits  in
   understanding  and  use  of  gestures,  to   a
   total  lack  of  facial  expression  and
   nonverbal  communication.    
• 3. Deficits  in  developing,  maintaining,  and
   understanding   relationships,  ranging,  for
   example,  from  difficulties  adjusting  
  behavior  to  suit  various  social  contexts
   to  difficulties  in  sharing   imaginative
   play  or  in  making  friends  to  absence  of
   interest  in   peers

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299.00 Autism Spectrum Disorder

• B.  Restricted,  repetitive  patterns  of
   behavior,  interests,  or  activities,   as
   manifested  by  at  least  two  of    the
   following,  currently  or  by   history
   (examples  are  illustrative,  not  exhaustive
   see  text)    
• 1. Stereotyped  or  repetitive  motor  movements,
   or  use  of  objects,  or   speech  (e.g.,
   simple  motor  stereotypies,  lining  up  toys
   or  flipping   objects,  echolalia,
   idiosyncratic  phrases).      
• 2. Insistence  on  sameness,  inflexible
   adherence  to  routines,  or   ritualized
   patterns  of  verbal  or  nonverbal  behavior
   (e.g.,  extreme   distress  at  small  changes,
   difficulties  with  transitions,  rigid
   thinking   patterns,  greeting  rituals,  need
   to  take  same  route  or  eat  same   food
   every  day).    
• 3. Highly  restricted,  fixated  interests  that
   are  abnormal  in  intensity  or   focus  (e.g.,
   strong  attachment  to  or  preoccupation  with
   unusual   objects,  excessively  circumscribed
   or  perseverative  interests).    
• 4.  Hyper--or  hypo--reactivity  to  sensory
   input  or  unusual  interest  in   sensory
   aspects  of  environment  (e.g.,  apparent
   indifference  to   pain/temperature,  adverse
   response  to  specific  sounds  or  textures,  
  excessive  smelling  or  touching  of  objects,
   fascination  with  lights  or   spinning
   objects).

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299.00 Autism Spectrum Disorder

• C. Symptoms  must  be  present  in  early
   developmental  period  (but  may   not  become
   fully  manifest  until  social  demands  exceed
   limited   capacities,  or  may  be  masked  by
   learned  strategies  in  later  life).  
•  
• D.  Symptoms  cause  clinically  significant
   impairment  in  social,   occupational,  or
   other  important  areas  of  current
   functioning.  
•  
• E.  These  disturbances  are  not  better
   explained  by  intellectual  disability  
  (intellectual  developmental  disorder)  or
   global  developmental   delay.  Intellectual
   disability  and  autism  spectrum  disorder  
  frequently  co--occur  to  make  comorbid
   diagnoses  of  autism   spectrum  disorder  and
   intellectual  disability,  social  communication
    should  be  below  that  expected  for  general
   developmental  level.

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(important) Note

• Individuals with a well-established DSM-IV
  diagnosis of autistic disorder, Aspergers
  disorder, or pervasive developmental disorder not
  otherwise specified should be given the diagnosis
  of autism spectrum disorder. Individuals who have
  marked deficits in social communication, but
  whose symptoms do not otherwise need criteria for
  autism spectrum disorder, should be evaluated for
  social (pragmatic) communication disorder

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The Importance of Effective Early Diagnosis and
TreatmentA public health perspective

• Earlier diagnosis More intervention
  opportunities
• More opportunities Optimal intervention
  benefit
• Core features social communication / atypical
  behaviors
• Cognitive and adaptive functioning
• Fully integrated classroom placements
• Potentially promoting optimal adaptive
  independence
• Potentially reducing considerable lifetime cost
  and service system demands associated with ASD
  and related care

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From Concern to Effective Treatment
Noticing Developing Concerns
Discussing Concerns with Others
Accurate Diagnosis
Effective Treatment
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Complex and Stressful Process for Families
Noticing Developing Concerns
Discussing Concerns with Others
Accurate Diagnosis
Partners
Providers
Friends
Everything is fine!
Something is wrong!
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Science in Context
Partners
Pediatrician
Providers
Friends
Noticing Developing Concerns
Discussing Concerns with Others
Accurate Diagnosis
Social Media
Autism Speaks
CDC
Google
DAN
AAP
TV
Blogosphere
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Costs of ASD

• Recent estimates of annual incremental costs
• (see Amendah et al., 2011)
• 2,100 11,200 medical expenditures
• 13,000 educational costs
• 40,000-60,000 intensive behavioral tx
• 60,000-128,000 residential costs for adults
  w/ASD
• Productivity loss, overall lifetime costs,
  quantification of impact of early intervention
  programs
• Most quoted total lifetime costs 3.2 million
  (Ganz, 2007)
• Mean medical expenditures for Medicaid enrolled
  children 6 times greater for children with ASD
  10,709 to 1,816 (Peacock, 2012)

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Historical Perspective

• Not far removed from an untreatable era
• Rutter (1970)
• lt2 functioning normally
• 60 requiring institutional placement/support
• Lovaas (1987) UCLA Young Autism Project
• Intensive ABA 9 / 19 (47) recovered or
  normal functioning
• A breakthrough with major methodological concerns

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Two decades of research findings

• Over short periods of time findings related to
• language acquisition
• nonverbal communication
• reduction in challenging behaviors
• social skills
• Over longer periods of time
• cognitive ability / IQ
• educational success
• Suggestions of medications and complementary
  agents
• primarily associated symptoms
• claims of broad effects

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Why Are We Doing This?Our fundamental
assumption

• Accurate early identification of a specific
  common neurodevelopmental disorder in childhood
  should help us connect to specific intervention
  and treatment options that optimize functioning
  for children and families

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Promise of recovery (AKA HOPE)

• Actual randomized controlled studies
• optimal outcome studies
• www.talkaboutcuringautism.org
• http//www.newautism.com/ (how I learned to cure
  autism)
• The Bonding Hormone That Might Cure Autism
• Jenny McCarthy My son's recovery from autism
• If Autism is your question, The Son-Rise Program
  is your answer!
• http//www.vitamindcouncil.org
• Can Clay Baths Cure Autism? Yes!
• http//www.earthclinic.com/CURES/autism.html

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Treatments and Therapies 78,300,000 results
(0.08 seconds)

• Auditory Integration
• Sensory Integration
• ABA
• Discrete Trial Training
• Lovaas/UCLA Intervention
• Early Start Denver Model
• Holding Therapy
• Dolphin Assisted Therapy
• Facilitated Communication
• Augmentative Communication
• Vision Therapy
• Vitamins
• Hyperbaric Oxygen
• Psychopharmacological treatments

• Floortime
• Music Therapy
• Social Skills Training
• Incidental Teaching
• TEACCH
• PECS
• Pivotal Response Therapy
• Son-Rise
• RDI
• Chelation
• Diets
• Drugs
• Supplements

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Evidence-Based Interventions

Antecedent-Based Interventions (ABI)
Computer-Aided Instruction Differential
Reinforcement Discrete Trial Training
Extinction Functional Behavior Assessment
Functional Communication Training Naturalistic
Intervention Parent-Implemented Intervention
Peer-Mediated Instruction and
Intervention Picture Exchange
Communication System (PECS) Pivotal Response
Training Prompting Reinforcement Response
Interruption/ Redirection
Self-Management Social Narratives Social
Skills Groups Speech Generating Devices/
VOCA Structured Work Systems Task
Analysis Time Delay Video Modeling
Visual Supports
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Applied Behavior Analysis (ABA)

• What is ABA?
• How is it different from other approaches?
• How is it done?

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Baer, Wolf, Risley (1968)

• APPLIEDstrives to produce rapid and clear
  benefit to problems of social importance
• BEHAVIORALuses objective and accurate
  measurement of the behavior of interest
• ANALYSISuses controlled (single-case) methods to
  understand the environmental variable(s) that
  influence an individuals behavior.

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Outcomes of ABA for Autism
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30
25
20
Increases in IQ Scores
r .79
15
p lt .02
10
5
0
0
5
10
15
20
25
30
35
40
45
Hours per Week of Treatment
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Cost-Benefit Analysis of Early, Intensive
ABA for Autism

• Average lifetime cost for a person with autism is
  over 4 million
• Average cost of Early, Intensive ABA is 150,000
  over about 3 years
• Average lifetime savings from ABA Treatment is
  between 1.6 and 2.7 million

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Examples of ABA

• Edward and go find
• Small group instruction hoping frogs

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Examples of Relationship-Based Methods

• Early Start Denver Model
• Paddy Feet
• Bubbles

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Early Intensive Behavioral and Developmental
Interventions (EIBDI)

• Comprehensive (see Rogers and Vismara, 2008)
• Focus on several areas of functioning vs. skill
  specific intervention
• Draw from principles of Applied Behavior Analysis
  (ABA)
• Method and setting
• ABA umbrella term for learning principles/techniqu
  es
• Teach new behaviors, reduce challenging behaviors
  
• Systematic reinforcement
• ABA is a term existing for decades prior to
  specific adoption within autism intervention
  literature

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Early intensive behavioral and developmental
interventions

• UCLA/Lovaas model variants
• Intensive intervention (18-36 hr) utilizing
  operant conditioning, emphasis on structure and
  discrete trial toward generalization of skills
• Variants of Early Intensive Behavioral
  Intervention (EIBI)
• Is this a category?
• Comprehensive approaches for children under 2
• ABA principles within a developmental and
  relational framework
• Early Start Denver Model (ESDM) / Early social
  communication training
• Range Intensive intervention (15-20 hours) to
  lower levels
• Parent-training
• Pivotal Response Training, Social Pragmatic
  Intervention, More than Words, etc.

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Where does this leave us now?
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Methodology is limiting our understandingof
intervention impact / potential
Lack of current evidence does not equal lack
of effect or potential effect of treatmentSome
current and available ASD interventions do make a
tremendous impact for some childrenHow do we
best serve children in our backyards?
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How do we choose and value treatments?

• Individualized intervention
• What works for which children and why?
• What is the meaningful social and functional
  impact?
• Range of outcomes to be expected ?
• How do we value therapeutic changes?
• A changing landscape
• Improved understanding of disorder
• Improved study and improved interventions
• Methodologically rigorous and meaningful
  investigation

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Questions?