An Hour of Autism:Diagnosis, Treatment, What we

do and don’t know

Jennifer Bogin, M.S.ed, BCBADirector

Division of Autism Spectrum Services

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??????

Defining:Autism 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 – Asperger’s Disorder

2013- DSM-5- Autism Spectrum Disorder

Jenn’s 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….

So of course it’s controversial..

We can (kind of) define who has it

We have (almost) no idea what causes it

We don’t know IF it is increasing

IF it is then we don’t know why

We can make it better (if you consider it a problem)

The nature of Autism Spectrum Disorder

Stayed tuned for more on DSM-5 later!

Core Symptom DomainsPLUS Associated Medical Features

Social Impairment

& Restricted Interests

Speech/Communication

Deficits

Obsessive Compulsive

Disorder

AUTISMSPECTRUM

DISORDERS

Language DisordersIntellectual Disabilities

ADHDSocial Anxiety

OCD

AggressionEpilepsy-EEG abnormalities

Motor problems: Apraxia

Immune Dysfunction

Gastro-intestinal Dysfunction

Sleep Disturbance

Autism Spectrum Disorders (ASD)

First lets look at Identification…We were pretty good at picking up this guy… (Early Onset)

But now we’re picking up this one…. (Regression)

What are the implications?

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).  

Prevalence:What 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)

New diagnostic measuresAutism Diagnostic Interview (1989, 1994)Autism Diagnostic Observation Schedule

(1989, 2000)

Screening tools/algorithms/instruments in wide use:MCHAT / AAP guidelinesSCQSRS

Why are numbers increasing: Better tools?

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???

Why are numbers increasing: Lots of reasons?

DSM-5Distinctions can be difficult both within the spectrum and across

other disorders

Autism Spectrum Disorder

Autistic D/O Asperger’s PDD-NOS

DSM-5Deficits in social communication (all 3):

Deficits in nonverbal communicationDeficits in social and emotional reciprocity Deficits in maintaining relationships

Restricted, repetitive patterns of behavior, interest, and activities (2)Stereotyped motor or verbal behaviorUnusual sensory behaviorExcessive adherence to routines and ritualized bhxRestricted, fixated interests

Symptoms present in early childhood (manifest when social demands exceed capabilities)

Neurodevelopmental UnderpinningsCore and associated vulnerabilities

likely have complex neurogenetic

origins:

Evidence:

Maleness (3:1 to 4:1)

Familial loading/risk: MZ twins: 58-96% DZ twins: 0-31% Sibs: 5-20%

(18.7% - Ozonoff et al., Pediatrics, 2011) 1% - Population

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

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).

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.

(important) Note:Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s

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

The Importance of Effective Early Diagnosis and Treatment:

A public health perspective

Earlier diagnosis = More intervention opportunities

More opportunities = Optimal intervention benefitCore features: social communication / atypical behaviorsCognitive 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

From Concern to Effective Treatment

Effective Treatment

Complex and Stressful Process for Families

Partners ProvidersFriends

“Everything is fine!” “Something is wrong!”

Partners PediatricianProvidersFriends

Social Media

CDCGoogleDAN AAP TV BlogosphereAutism Speaks

Science in Context

Costs of ASDRecent 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)

Historical PerspectiveNot far removed from an “untreatable” era

Rutter (1970):<2% 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

Over short periods of time findings related to:language acquisitionnonverbal communicationreduction in challenging behaviorssocial skills

Over longer periods of time:cognitive ability / IQeducational success

Suggestions of medications and complementary agents:primarily associated symptomsclaims of broad effects

Two decades of research findings:

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

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

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

Evidence-Based Interventions*

Applied Behavior Analysis (ABA)

What is ABA?

How is it different from other approaches?

How is it done?

Baer, Wolf, & Risley (1968)

APPLIED—strives to produce rapid and clear benefit to problems of social importance;

BEHAVIORAL—uses objective and accurate measurement of the behavior of interest;

ANALYSIS—uses controlled (single-case) methods to understand the environmental variable(s) that influence an individual’s behavior.

Outcomes of ABA for Autism

0

5

10

15

20

25

30

35

0 5 10 15 20 25 30 35 40 45

Hours per Week of Treatment

Incr

ease

s in

IQ

Sco

res

r = .79p < .02

Cost-Benefit Analysis of Early,

Intensive ABA for AutismAverage 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

Examples of ABAEdward and “go find”

Small group instruction “hoping frogs”

Examples of Relationship-Based Methods

Early Start Denver Model ‘Paddy Feet’ Bubbles

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/techniquesTeach new behaviors, reduce challenging behaviors Systematic reinforcement

ABA is a term existing for decades prior to specific adoption within autism intervention literature

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.

Where does this leave us now?

Methodology is limiting our understandingof intervention impact / potential

Lack of current evidence does not equal lack of effect or potential effect of treatment

Some current and available ASD interventions do make a tremendous impact for some children

How do we best serve children in our backyards?

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

Questions?