1. 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.

2. What is Autism?

3. Autism Spectrum Disorders (ASDs) Pervasive Developmental Disorders (PDD) PDD = an “umbrella category” Autism PDD-NOS (Atypical Autism) Asperger’s Syndrome Childhood Disintegrative Disorder Rett’s Syndrome

4. 3 Core Areas Affected:  Reciprocal Social Interactions  Communication  Behaviors and Interests ------------------------------------------------------ Development in these areas follows a DIFFERENT path than that of most children. Differences are QUALITATIVE, not only the result of delays.

5. What is Autism? Developmental Disability not identifiable at birth Neurological Disorder complex genetic interaction + ??? Complex Disorder many areas affected Wide Range of Impairment mild to severe across areas

6. ASD ASD Defies Generalization Measured Intelligence Severe-----------------------------------------------Gifted Social Interaction Aloof-----------------Passive-------------Active but odd Communication Nonverbal-------------------------------------------Verbal Behaviors Intense---------------------------------------------------Mild Sensory Hyposensitive-----------------------------Hypersensitive Motor Uncoordinated-------------------------------Coordinated

7. Diagnosis 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

8. 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

9. 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!

10. 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

11. 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)

12. 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

13. Concerns Over Numbers of People with Autism Low Incidence Disorder? Past estimates of 4-5 per 10,000 children with autism Service Provider Numbers: show more people identified with an Autism Spectrum Disorder (ASD) for services Number of Children with Autism Served under IDEA, Part B, 1992-93 to 2000-01, 6-21 years

14. Public Health Model       

15. CDC Programs Specific to ASDs Surveillance/Monitoring—Address questions on the prevalence/trends Epidemiologic Research: Examine risk/protective factors Prevention— “Learn the Signs. Act Early.”

16. What’s in a Number? 1 in 10,000 4-5 in 10,000 1 in 1,000 1 in 500 1 in 200 1 in 166 1 in 150

17. 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

18. 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: Mental Retardation/ Intellectual Disability Cerebral Palsy Hearing Loss Vision Impairment Autism Spectrum Disorders (since 1996)

19. How do the prevalence of ASDs compare with other DDs? MADDSP Prevalence of Developmental Disabilities per 1,000 8-year-olds in 2000 Intellectual Disabilities12.0 Autism6.5 Cerebral Palsy3.1 Hearing Loss1.2 Vision Impairment1.2 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.

20. Prevalence of MR, CP, HL, VI and ASDs Among Children in MADDSP 8 year olds (1991-1994, 1996, 2000, 2002)

21. CDC has formed the Autism and Developmental Disabilities Monitoring (ADDM) Network in an effort to better understand the ASDs in the US. This is the first and largest multi-site report on ASD prevalence to use common methods in the US to date. Autism and Developmental Disabilities Monitoring (ADDM) Network

22. Washington Montana Oregon Nevada California Utah Arizona New Mexico Colorado Idaho Wyoming North Dakota South Dakota Minnesota Iowa Nebraska Kansas Texas Florida Mississippi Louisiana Alabama Georgia South Carolina North Carolina Virginia Maine New York Michigan Wisconsin Oklahoma Missouri Arkansas Tennessee Kentucky Illinois Indiana Michigan Ohio West Virginia DC Maryland Delaware New Jersey Vermont Rhode Island Connecticut New Hampshire Massachusetts Alaska Hawaii Pennsylvania U.S. Virgin Islands Puerto Rico Guam CDC 11 ADDM Sites 2006-2010 (10+CDC) 16 ADDM Sites 2001-2006 (15 +CDC) + CDC Establishing a Network to Monitor ASDs and other DDs in the United States

23. Phase 1 Results Summary of ADDM 2000, 2002, and Evaluation of ADDM Methods Three reports of the ADDM Network ASD prevalence results are published in CDC’s MMWR Surveillance Summaries Feb 9, 2007 www.cdc.gov/autism Podcast on Autism www2a.cdc.gov/podcasts/

24. Surveillance Year 2002 (8-year-olds born in 1994)  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.

25. Three reports of the ADDM Network ASD prevalence results are published in CDC’s MMWR Surveillance Summaries www.cdc.gov/autismwww.cdc.gov/autism

26. 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.

27. 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.

28. ASD Over 2 Time Points – 6 Sites No Significant Change Significant Change

29. 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.

30. 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

31. 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

32. Public Health Model       

33. 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?

34. 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.

35. Research: Study to Explore Early Development (SEED) Some areas to be included: Infection and immune function, including autoimmunity Reproductive and hormonal features Gastrointestinal features Genetic features Investigation of the broader ASD phenotype Sociodemographic characteristics Substance use, hospitalizations and injuries, sleep disorders, and mercury exposure

36. 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 Findings of 2007

37. Significant Needs Improving Intervention –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

38. Public Health Model       

39. 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

40. 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.

41. 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. www.cdc.gov/actearly CDC Prevention: Learn the Signs. Act Early.

42. www.cdc.gov/actearly Learn the Signs. Act Early.