Transcript Screening for Autism Spectrum Disorders: The “wh” questions

Autism Spectrum Disorders (ASDs):
What We Know and How Pediatric
Health Care Professionals Can Help
Patients and Families
April 30, 2012
offered by the American Academy of Pediatrics in collaboration with the
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Autism Spectrum Disorders:
Findings from the Latest ADDM Network Prevalence Report and
an Update on CDC’s Autism-related Activities
Marshalyn Yeargin-Allsopp, MD
Chief, Developmental Disabilities Branch
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Birth Defects and Developmental Disabilities
Dr Yeargin-Allsopp has nothing to disclose
relevant to this presentation.
Background
• Autism spectrum disorders (ASDs) are a group of
developmental disabilities characterized by impairments in
social interaction and communication and by restricted,
repetitive, and stereotyped patterns of behavior
• Challenges in tracking the prevalence of autism include:
– Complex nature of the disorders
– Lack of biologic markers for diagnosis
– Changes in diagnostic practices over time
ADDM Network Methods
• Multisite, multisource, records-based surveillance methodology
Screening and abstraction
of records at multiple data
sources in community
All abstracted evaluations
reviewed by trained
clinicians to determine
autism case status
ADDM Network Autism Prevalence Reports
• 2007: First reports in MMWR SS representing 2000 & 2002 surveillance
years
– 1 in 150 8-year-old children in these communities identified with autism
• 2009: Second reports in MMWR SS representing 2004 & 2006 surveillance
years
– 1 in 110 8-year-old children in these communities identified with autism
– Autism prevalence increased 57% between 2002 and 2006
• Current ADDM Network report provides:
–
–
–
–
14 areas in U.S.
Autism prevalence estimates for the 2008 surveillance year
Characteristics of children identified with autism
Comparisons to earlier ADDM Network surveillance years (2002 & 2006)
ADDM Network 2000-2008
Identified Prevalence of Autism
Combining Data from All Sites
Surveillance Year
Birth
Year
Number of
ADDM Sites
Reporting
2000
1992
6
2002
1994
14
2004
1996
8
2006
1998
11
2008
2000
14
Prevalence per
1,000 Children
About 1 in X
Children…
(Range)
6.7
(4.5-9.9)
6.6
(3.3-10.6)
8.0
(4.6-9.8)
9.0
(4.2-12.1)
11.3
(4.8-21.2)
1 in 150
1 in 150
1 in 125
1 in 110
1 in 88
Change in Identified Autism Prevalence Among ADDM Sites
25
Identified Autism Prevalence per 1,000
2002
20
15
10
5
0
2006
2008
Change in Identified Autism Prevalence by Sex
(*Percent change in 13 sites completing both 2002 & 2008 surveillance years)
Change in Identified Autism Prevalence by Race/Ethnicity
(*Percent change in 13 sites completing both 2002 & 2008 surveillance years)
*70%
Change in Identified Autism Prevalence by Intellectual Ability⁺
(*Percent change in 7 sites⁺ completing both 2002 & 2008 surveillance years)
*96%
*44%
⁺Includes sites having information on intellectual ability available for at least 70% of children who met the autism case definition
Variation across Sites in Identified Prevalence of Autism
Identified Autism Prevalence per 1,000
ADDM Network, 14 Sites, 2008
Health-Only Records Access
Education & Health Records Access
Change in Proportion of Children with
Previously Documented Autism Classification
(Combining data from 10 sites completing 2002, 2006 and 2008 surveillance years)
Surveillance
Year
2002
2006
2008
% with Previously
Documented
Autism
Classification
72%
77%
79%
• Proportion of children meeting the autism surveillance case
definition with a documented autism classification in their records
increased over time in 7 of 10 sites completing all three
surveillance years
Earliest Known Autism Diagnosis
Median Age and Proportion by Diagnostic Subtype
ADDM Network, 2008
(Combining data from 14 sites completing 2008 surveillance year)
Subtype of Earliest Diagnosis:
Distribution of Subtypes:
Median Age of Earliest Diagnosis:
Autistic
Disorder
ASD/PDD
Asperger
Disorder
44%
47%
9%
48 Months 53 Months 75 Months
Limitations:
1) Diagnostic information obtained from evaluation records may not
capture the exact age of each child’s earliest diagnosis
2) Instability of diagnostic subtypes over time
Summary of Findings
• Identified prevalence of autism continues to rise in most ADDM
Network communities
• Combining data from all sites:
– 1 in 88 eight-year-old children identified with autism
• 23% increase, 2006-2008
• 78% increase, 2002-2008
– Rate of increase higher among Hispanic children, black children, and
children without intellectual disability
• Identified prevalence of autism varies widely
– Across sites
– By sex
– By race/ethnicity
Implications of ADDM Network Findings
and Resources For Using the Data
• More children than ever are being recognized as having autism
– Still concerned that 20% are not classified with autism by community
providers, others are not recognized as early as they can be
To download a copy of the Community Report, please visit www.cdc.gov/autism
More Than Just A Number…
Provides a
more
complete
picture of
autism
Informs early
identification
efforts
CDC’s
Autism
Tracking
Guides our
research and
the research
of other
scientists
Helps identify
potential risk
factors
CDC’s Work In Autism and What It Means For
Communities
• Through CDC’s work in autism over the past 15 years:
– We know more about which children are more likely to have autism.
– We know at what age they are likely to be diagnosed.
– And, we know whether progress has been made in diagnosing
children with autism early.
• This is the information communities need to plan for
services and understand where improvements can be made
to help children.
Thank You!
For more information, please contact
Dr Yeargin-Allsopp at [email protected]
For more information please contact Centers for Disease Control and
Prevention
1600 Clifton Road NE, Atlanta, GA 30333
Telephone, 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348
E-mail: [email protected] Web: www.cdc.gov
National Center on Birth Defects and Developmental Disabilities
Division of Birth Defects and Developmental Disabilities
Improving Early Identification
through
“Learn the Signs. Act Early.”
Georgina Peacock, MD, MPH, FAAP
National Center on Birth Defects and
Developmental Disabilities
April 30, 2012
National Center on Birth Defects and Developmental Disabilities
Division of Birth Defects and Developmental Disabilities, Prevention Research Branch
Dr Peacock has nothing to disclose
relevant to this presentation.
www.cdc.gov/ActEarly
“Learn the Signs. Act Early.”
 Aims to improve early identification of
children with autism and other
developmental disabilities so children
and families can get the services and
support they need as early as possible.
www.cdc.gov/ActEarly
Program Components
• Health communication
campaign
• Act Early Initiative
• Research and
evaluation
www.cdc.gov/ActEarly
www.cdc.gov/ActEarly
3 Products Great for MD Offices
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Milestone Brochure
Milestone Moments Booklet
Amazing Me
www.cdc.gov/ActEarly
Milestone Brochure
www.cdc.gov/ActEarly
Milestone Brochure
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Education and awareness for parents
Important milestones 6 months - 4 years
Available in English and Spanish
For waiting & exam rooms
8½ x 11 trifold
Display in card stand (2 pockets)
www.cdc.gov/ActEarly
Milestone Moments Booklet
www.cdc.gov/ActEarly
Milestone Moments Booklet

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Comprehensive milestone checklists for
parents 2 months – 5 years
Tips and warning signs
Available in English, Spanish
Hand to parent
5” x 7”
46 pages
www.cdc.gov/ActEarly
Milestone Domains

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Social/Emotional
Language/Communication
Cognitive
Movement/Physical
Development
www.cdc.gov/ActEarly
Understanding Milestone Moments
Milestone
checklists
Development
Tips
www.cdc.gov/ActEarly
Understanding Milestone Moments,
cont.
www.cdc.gov/ActEarly
“Amazing Me—It’s Busy Being 3!”
Children’s book
 Milestones highlighted throughout story
 Parent section includes 3-year-old milestones, tips,
when to act early
 Limited availability

www.cdc.gov/ActEarly
3 Ways to Get Them

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Download and print
Order
Customize
www.cdc.gov/ActEarly
www.cdc.gov/ActEarly
Customize!

What to add:
 Your office number and logo
 Local early intervention program
 Other local resources

How to customize:
 Email us [email protected]
 We’ll send instructions about getting
the files (Adobe InDesign)
 You (or your printer) add contact
information
 You take the files to a local printer
www.cdc.gov/ActEarly
Other Materials

Milestone Checklists
 2 months—5 years of age

Condition-Specific Fact Sheets
 Lay introduction to disability
 ASD, Asperger Syndrome, ADHD, FASD, CP, Intellectual
Disability, Vision Loss, Hearing Loss, Duchenne Muscular
Dystrophy
Developmental Screening Fact Sheet
 National Resource List

www.cdc.gov/ActEarly
Autism Case Training:
A Developmental Behavioral Curriculum

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7 cases
Written by 23 authors
Reviewed by 17 expert developmental-behavioral
pediatricians
Featuring:
 33 handouts
 27 videos
www.cdc.gov/ActEarly
Curriculum Modules
Early
Identification
and Screening
Diagnosis
Early Warning
Signs of Autism
Communicating
Concerns:
Screening and
Diagnosis
Results
Caring for
Children with
ASD
Early
Intervention and
Education
Treatment for
ASDs
Screening for
Autism
Making an
Autism
Diagnosis
www.cdc.gov/ActEarly
Autism-Specific
Anticipatory
Guidance
www.cdc.gov/AutismCaseTraining
www.cdc.gov/ActEarly
ACT – Online Video Library
www.cdc.gov/ActEarly
Continuing Education
Available this summer
www.cdc.gov/ActEarly
Continuing Education
Available this summer
www.cdc.gov/ActEarly
Continuing Education
Available this summer
www.cdc.gov/ActEarly
Continuing Education
Available this summer
www.cdc.gov/ActEarly
Putting the Materials to Work
Get Creative! Think Impact!
www.cdc.gov/ActEarly
Contact us
[email protected]
Contact me
[email protected]
www.cdc.gov/ActEarly
For more information please contact Centers for Disease Control and Prevention
1600 Clifton Road NE, Atlanta, GA 30333
Telephone, 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348
E-mail: [email protected] Web: www.cdc.gov
The findings and conclusions in this report are those of the authors and do not necessarily represent the official
position of the Centers for Disease Control and Prevention.
National Center on Birth Defects and Developmental Disabilities
Division of Birth Defects and Developmental Disabilities, Prevention Research Branch
Screening for Autism Spectrum
Disorders: The “Wh” Questions
Susan L. Hyman, MD, FAAP
Neurodevelopmental and Behavioral Pediatrics
University of Rochester
Chairperson, AAP Autism Subcommittee
April 30, 2012
Dr Hyman is partially funded by the Autism Treatment
Network/HRSA AIRP with funding through a cooperative
agreement (UA3 MC 11054) from the US Department of
Health and Human Services, Health Resources and
Services Administration, Maternal and Child Health
Research Program, to the Massachusetts General Hospital
She has nothing to disclose relevant to this presentation.
To provide effective screening for ASDs,
the following “Wh” questions need to be
answered:
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Who should be screened?
Who is at increased risk?
When should children be screened?
Why is screening recommended starting at 18
months?
What screening tests should be used?
What guidance and support is available for
screening in primary care?
What happens after screening?
Who should be screened for ASDs?
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AAP recommends that ALL toddlers be
screened for ASDs
– Median age for autism diagnosis: 48 mths*
– Median age for Asperger syndrome diagnosis: 75 mths*
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Ongoing surveillance is necessary even with
screening
– Children with typical cognitive abilities might not be
identified until school age
– Evaluate symptoms reported by parents compatible
with ASDs
*CDC, 2012
Who is at increased risk for ASDs?
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Subsequent siblings of a child with ASDs:
18.7%*
Children with Fragile X syndrome: 21%
Children with Down syndrome: 7-18%
Children with tuberous sclerosis: 40%
Premature infants
Prenatal exposures (eg, valproic acid)
*Ozonoff, 2011
When should children be screened
for ASDs?
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AAP recommends screening for ASDs at 18
and 24 months of age
– Visit at 30 months of age is suggested
– Regression occurs in 25-30% of children with
ASDs between 15 and 24 months
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Routine developmental screening is
recommended at 9, 18, and 30 months
Surveillance should be ongoing
– 4/21 children with ASDs in large screening
study were not identified at age 4
Why is screening recommended
starting at 18 months?
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Development of social communication:
– Pointing
– Attending to name
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Development of play:
– Simple pretend play
early recognition  access to intervention  improved outcomes
What screening tests should be used?
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Clinicians need to understand the
sensitivity, specificity, and positive
predictive value of the tests they use
– EMR prompts are helpful
– Billing for screening by office staff
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Screening needs to fit into office work flow
Scheduled return visit may be necessary to
further explore development and behavior
What overlap is there in these tests?
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General developmental screening tests do
not necessarily identify children with ASDs
– PEDS (Pinto Martin, 2008)
– Ages and Stages
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ASD screening tests identify other delays
in development
What screening tests are used for ASDs?
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Modified Checklist for Autism in Toddlers
(MCHAT)
– Age: 16-48 months
– Sensitivity: if miss 2 critical items 77%, if miss
3 of 23 total, 92%
– Specificity: if miss 2 critical items 43%; if miss
3 of 23 total 27%
– Positive Predictive Value: .57
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PPV improved by follow up interview to: .74
M-CHAT: Does your child...
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Like to be swung?
Take interest in other children?
Like climbing?
Enjoy peek-a-boo?
Ever pretend to talk on the
phone?
Ever use index finger to point to
ask? To indicate interest?
Play properly with small toys?
Bring objects to show?
Look you in the eye?
Seem oversensitive to noise?
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Smile in response to you?
Imitate you?
Respond to name?
If you point, does he look?
Walk?
Look at things you are?
Make unusual finger
movements near face?
Act as if deaf?
Understand what people say?
Stare at nothing?
Look at your face to check
reaction?
Robins et al, 1999
M-CHAT website: www2.gsu.edu/~psydlr
What do you do with a positive
screening test for ASDs?
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Refer for additional evaluation
– 0-3: Early Intervention
– 3-21 years: Home School District
– Diagnostic evaluation for ASDs
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Refer for effective intervention
– 61% of children with failed developmental
screens were referred for intervention (King et
al, 2010)
What AAP information is available for
primary care pediatricians related to
screening for ASDs?
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“Autism: Caring for Children with
Autism Spectrum Disorders: A
Resource for Clinicians” (2008; 2nd ed.
Oct 2012)
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Clinical Reports on Identification,
Evaluation & Management of
ASDs (Pediatrics, 2007; Reaffirmed 2010)
Website: www.aap.org/autism
What AAP information is available to
help counsel parents about ASDs?
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“Is Your Toddler Communicating
With You?” Brochure
“Understanding ASDs” Booklet
Sound Advice on Autism – Audio
Series for Parents
www.HealthyChildren.org
What happens next? Providing a medical
home for children & youth with ASDs
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Accessible, continuous, culturally
effective, comprehensive, family centered,
compassionate, coordinated care
Evaluate for medical causes of ASDs and
developmental delay
Monitor for common comorbid medical
conditions
www.medicalhomeinfo.org
Questions?
Information about AAP autism resources—
including the audio file and presentation from
this webinar—can be found at
www.aap.org/autism