Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification NAACHO Webcast April 17, 2008. Catherine Rice , Ph.D. Katie Kilker , MPH, CHES National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention. - PowerPoint PPT Presentation
Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification NAACHO Webcast April 17, 2008 Catherine Rice, Ph.D. Katie Kilker, MPH, CHES National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention CDC, our planners, and our presenters wish to disclose they have no financial interest or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use.
Transcript
Autism Spectrum Disorders (ASDs): Perspectives on Surveillance, Research, and Early Identification
NAACHO WebcastApril 17, 2008
Catherine Rice, Ph.D.Katie Kilker, MPH, CHES
National Center on Birth Defects and Developmental DisabilitiesCenters for Disease Control and Prevention
CDC, our planners, and our presenters wish to disclose they have no financial interest or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use.
What is Autism?
Autism Spectrum Disorders (ASDs)
Pervasive Developmental Disorders (PDD)PDD = an “umbrella category”
Reciprocal Social InteractionsCommunicationBehaviors and Interests------------------------------------------------------Development in these areas follows a DIFFERENT
path than that of most children. Differences are QUALITATIVE, not only the result
of delays.
What is Autism?
• Developmental Disability not identifiable at birth
• Based on observable behaviors• Pattern of development• Social, Communication, Behavioral
Profile (DSM-IV Criteria)• Developmental history is important• There is no medical test to diagnose
autism or related disorders• Rule out other disorders
Myths of Autism
• The child with autism…– Is not affectionate– Does not form attachments– Never makes eye contact– Does not communicate– Engages in self-stimulatory
and repetitive behaviors all the time
– Lack emotional experience
Issues of “Autism” Label
• Rarely diagnosed before 3 years (improving) • Fear associated with “Autism”• Stereotypes of the person with autism• Boys and developmental milestones• “wait and see” approach• Subtler forms misdiagnosed• Access to services/treatment • Early and intense intervention makes a
difference!
What is Asperger’s Syndrome?
• No delay in basic language skills, but communication may be impaired
• Average to above average intelligence• Common issues as high-functioning autism• Pattern of unusual development in social
interaction skills and behaviors• Impairment in daily functioning, despite skills• Often not diagnosed until 6+ years• Early diagnoses: ADHD, OCD, LD, NVLD
Impact of ASD on Child• Inability or difficulty communicating – frustration• Reduced understanding of what is going on around them• Lack of interest or skill in interacting• Unusual play and learning• Unusual sensory reactions• Variable attention, activity level• Other medical issues or sensitivities (seizures, GI
distress, allergies, etc.)• SAFETY (reduced awareness, reaction, and self-injury)
Impact of ASD on Family• Lack of support from other family members and
community (know something is not going right)• Navigating system to get help –
– Just getting recognition of a problem is often a challenge– Hard to get intense intervention – Long waits for diagnosis
• Significant stress on parents and entire family• Siblings may also have difficulties, or must act as
“caretaker”• Intense and complicated needs of child• Emotional and financial costs of identifying problem
and getting support• Bombarded by options of interventions
Public Health Model
CDC Programs Specific to ASDs
• Surveillance/Monitoring—Address questions on the prevalence/trends
What’s in a Number? How do we know who is affected?
• It is clear that more children are identified with an Autism Spectrum Disorder (ASD) than in the past.– Children receiving services under a specific
classification– Children diagnosed in a medical or clinical setting
• Who else may have the condition(s)?– Little population-based data of the features of
ASDs• Population screening
– Direct screening – who participates?– Records-based screening
Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)
– Ongoing, active monitoring program since 1991– 5 counties of metro Atlanta– Multiple sources (educational, clinical, service sources)– 5 Disabilities:
How do the prevalence of ASDs compare with other DDs?
MADDSP Prevalence of Developmental Disabilities per 1,000 8-year-olds in 2000
Intellectual Disabilities 12.0Autism 6.5Cerebral Palsy 3.1Hearing Loss 1.2Vision Impairment 1.2
Karapurkar-Bhasin, Brocksen, Avchen, Van Naarden Braun. Prevalence of four developmental disabilities among children aged 8 years - the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000. MMWR SS 2005;55;1–9.
Prevalence of MR, CP, HL, VI and ASDs Among Children in MADDSP 8 year olds (1991-1994, 1996, 2000, 2002)
For the year 2002, from the 14 sites representing approximately 10% of US 8-year-old children (born in 1994) – 2,685 children were identified with an ASD.
The average prevalence across all 14 sites was very similar to 2000 at 6.6 per 1,000.
There was also a range 3.3 (AL) to 10.6 (NJ) per 1,000 children; however, for 12 of the 14 sites ASD prevalence was in a tighter range from 5.2 to 7.6 per 1,000.
Between 1:100 and 1:300 with an average of 1:150 children with ASD.
1
2
3
4
5
6
7
8
9
10
11
12
AL PA WI CO SC AZ NC MD AR WV MO UT GA NJ
Prev
alen
ce o
f ASD
(per
1,0
00)
ADDM 2002 ASD Prevalence
Previously Documented Classification
Three reports of the ADDM Network ASD prevalence results are published in CDC’s MMWR Surveillance Summaries www.cdc.gov/autism
ADDM 2002 ASD Prevalence Results• For every 1 girl with ASD there was
approximately 3 to 7 boys affected.
• 5 of 14 sites identified more White non-Hispanic children with ASD than Black non-Hispanic children.
• ASD prevalence was lower among Hispanic children across all sites.
• Most children were receiving special education services at age 8 years.– between 31% (CO) and 74% (MD) with autism eligibility.
ADDM ASD Early Delays and Age of Diagnosis
• In both reports, the majority of children identified with an ASD had documented concerns by a parent or professional before 3 years of age, such as concerns about the child’s language, social, or play development,
• but the median age of earliest ASD diagnosis was approximately 4 ½ to 5 ½ years.
• Over the 2 year period from 2000 to 2002, this delay in documented ASD diagnosis did not decline for the 6 sites included in both study years.
ASD Over 2 Time Points – 6 Sites
4
5
6
7
8
9
10
11
1998 2000 2002 2004 2006 2008
AZSCMDWVGANJ
No Significant ChangeSignificant Change
ASDs Over 2 Time Points – 6 Sites• Prevalence was stable from 2000 to 2002 in four
sites, but increased in 2 sites (slightly in GA and significantly in WV).
• While the stability of ASDs in 4 of the 6 sites is encouraging, the increase in 2 sites is a concern.
• We cannot yet say if ASDs are increasing overall, but these reports provide important baseline information continued monitoring of ASD prevalence in these sites will help us answer that question starting with children born in the 1990’s.
Prevalence Conclusions
• Results from the largest US multi-site collaboration to monitor ASDs underscore that ASDs are conditions of urgent public health concern.
• For the majority of communities represented, ASD prevalence ranged from 5.2-7.6 per 1000 children
• Some variation – ASD prevalence significantly lower in 1 site (AL) and higher in
1 site (NJ).– Average of 1 in 150 children
• (range from about 1 in 100 to 1 in 300)
• How many children in the U.S. have an ASD?How many children in the U.S. have an ASD?– Estimated: 560,000 children between 0-21 years
Next Steps for ADDM Network
• 8 sites completed study year 2004 for ASD– 4 sites working on a joint trend report
• 11 Sites beginning study year 2006 for ASD– 4 Sites for MR– 4 Sites for CP
• Analyses using pooled datasets• Public use datasets• Next surveillance study year, 2008
Public Health Model
Cause of Autism
• Complexity of Identifying Causes– Cause is likely to be CAUSES– Autism is likely to be AUTISMS
• Complex Genetic and Environmental Interactions– What predisposes a child?– What exposures are necessary?
Research: Study to Explore Early Development (SEED)
Multi-state collaborative study to help identify factors that may put children at risk for autism spectrum disorders and other developmental disabilities.
California, Colorado, Georgia, Maryland, North Carolina, Pennsylvania
Approximately 2,700 children, ages 2 to 5, and their parents will be part of this study.
Research: Study to Explore Early Development (SEED)
Some areas to be included:Infection and immune function, including autoimmunityReproductive and hormonal featuresGastrointestinal featuresGenetic featuresInvestigation of the broader ASD phenotypeSociodemographic characteristicsSubstance use, hospitalizations and injuries, sleep disorders, and mercury exposure
Interagency Autism Coordinating Committee (IACC)
• Congress called for an IACC to improve coordination of autism research among government and other organizations
• IACC revising a National Research Plan for autism.
• www.nih/nimh/iacc.gov
• CDC is a member of the IACC• Autism Speaks summarized Top 10 Research
– Individualized intervention– Comprehensive treatment and coordination– Access to intervention– Rapid, effective, and safe methods to evaluate new treatments
• Causes: Complex Genetic and Environmental Interactions– What predisposes a child?– What exposures are necessary?
• Lifetime perspective– Children with ASD will be adults with ASD
• Improving Identification– Early, accurate, makes a difference in access to intervention
Public Health Model
Parent Struggle for Answers
• Early signs may be subtle • Lack of physical signs• Inconsistent skills - strengths and weaknesses• Regression in some children• Parents often suspect their child
– has a hearing loss– was “too” good as a baby– has language delays
Parental Concerns (Wiggins, Baio, Rice, 2006)
Recent study by CDC indicated most children with an ASD diagnosis had signs of a developmental problem before the age of 3, but average age of diagnosis was 5 years.
Although we have much to learn about ASDs, there has been progress in the past 10 years. We do know that early identification and intervention can help a child develop skills, and that we need to do our best to appropriately plan for the significant support needs of people and families affected by ASDs.
