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Report to Congress Cover 2012
Report to Congress
On Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities
FY 2010 - FY 2012
Appendices

References

1 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. March 20, 2012; 61 (SS-03): 1-19. [PMID: 22456193]

2 U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – FY 2009). December 2010 (Rev. April 2011).

3 U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – FY 2009). December 2010 (Rev. April 2011).

4 Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research—2012 Update. December 2012.

5 Interagency Autism Coordinating Committee (IACC). 2012 IACC Summary of Advances in Autism Spectrum Disorder Research. April 2012.

6 NIH IC's on the IACC: NIDCD, NIMH, NIEHS, NINDS, NICHD.

7 Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research—2012 Update. December 2012.

8 Interagency Autism Coordinating Committee (IACC). 2012 IACC Summary of Advances in Autism Spectrum Disorder Research. April 2012.

9 Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2010 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. July 2012.

10 Interagency Autism Coordinating Committee (IACC). 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. January 2011.

11 Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2010 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. July 2012.

12 Anand V, Biondich PG, Liu G, Rosenman M, Downs SM. Child Health Improvement through Computer Automation: the CHICA system. Stud Health Technol Inform.2004;107(Pt 1):187-91. [PMID: 15360800]

13 Gerhard T, Chavez B, Olfson M, Crystal S. National patterns in the outpatient pharmacological management of children and adolescents with autism spectrum disorder. J Clin Psychopharmacol. June 2009;29(3):307-10. [PMID: 19440093]

14 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. December 18, 2009; 58(Vol. 10):1-20. [PMID: 20023608]

15 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. March 20, 2012; 61 (SS-03): 1-19. [PMID: 22456193]

16 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. February 9, 2007; 56(SS-1):1-11. [PMID: 17287714]

17 Destefano F, Price CS, Weintraub ES. Increasing exposure to antibody stimulating proteins and polysaccharides in vaccines is not associated with risk of autism. J Pediatr. August 2013;163(2):561-7. [PMID: 23545349]

18 Immunization Safety Review Committee. (2004) Immunization Safety Review: Vaccines and Autism. Go to website disclaimer  Institute of Medicine of the National Academies. Washington, D.C. The National Academies Press.

19 Bosl W, Tierney A, Tager-Flusberg H, Nelson C. EEG complexity as a biomarker for autism spectrum disorder risk. Go to website disclaimer  BMC Med. February 22, 2011;9:18. [PMID: 21342500]

20 Tierney AL, Gabard-Durnam L, Vogel-Farley V, Tager-Flusberg H, Nelson CA. Developmental trajectories of resting EEG power: an endophenotype of autism spectrum disorder. PLoS One. 2012;7(6):e39127. [PMID: 22745707]

21 Ozonoff S, Young GS, Carter A, Messinger D, Yirmiya N, Zwaigenbaum L, Bryson S, Carver LJ, Constantino JN, Dobkins K, Hutman T, Iverson JM, Landa R,Rogers SJ, Sigman M, Stone WL. Recurrence risk for autism spectrum disorders: a Baby Siblings Research Consortium study. Pediatrics. September 2011;128(3):e488-95. [PMID: 21844053]

22 Pierce K, Carter C, Weinfeld M, Desmond J, Hazin R, Bjork R, Gallagher N. Detecting, studying, and treating autism early: the one-year well-baby check-up approach. J Pediatr. September 2011;159(3):458-465.e1-6. [PMID: 21524759]

23 Schmidt RJ, Tancredi DJ, Ozonoff S, Hansen RL, Hartiala J, Allayee H, Schmidt LC, Tassone F, Hertz-Picciotto I. Maternal periconceptional folic acid intake and risk of autism spectrum disorders and developmental delay in the CHARGE (CHildhood Autism Risks from Genetics and Environment) case-control study. Am J Clin Nutr. July 2012;96(1):80-9 [PMID: 22648721]

24 Surén P, Roth C, Bresnahan M, Haugen M, Hornig M, Hirtz D, Lie KK, Lipkin WI, Magnus P, Reichborn-Kjennerud T, Schjølberg S, Davey Smith G, Øyen AS,Susser E, Stoltenberg C. Association between maternal use of folic acid supplements and risk of autism spectrum disorders in children. JAMA. February 2013 13;309(6):570-7. [PMID: 23403681]

25 Celestino-Soper PB, Violante S, Crawford EL. A common X-linked inborn error of carnitine biosynthesis may be a risk factor for nondysmorphic autism. Proc Natl Acad Sci U S A. May 22, 2012;109(21):7974-81. [PMID: 22566635]

26 Numata S, Ye T, Hyde TM, Guitart-Navarro X, Tao R, Wininger M, Colantuoni C, Weinberger DR, Kleinman JE, Lipska BK. DNA methylation signatures in development and aging of the human prefrontal cortex. Am J Hum Genet. February 2012. 10;90(2):260-72. [PMID: 22305529]

27 O'Roak BJ, Vives L, Girirajan S, Karakoc E, Krumm N, Coe BP, Levy R, Ko A, Lee C, Smith JD, Turner EH, Stanaway IB, Vernot B, Malig M, Baker C, Reilly B,Akey JM, Borenstein E, Rieder MJ, Nickerson DA, Bernier R, Shendure J, Eichler EE. Sporadic autism exomes reveal a highly interconnected protein network of de novo mutations. Nature. April 4, 2012;485(7397):246-50. [PMID: 22495309]

28 Neale BM, Kou Y, Liu L, Ma'ayan A, Samocha KE. Patterns and rates of exonic de novo mutations in autism spectrum disorders. Nature. April 4, 2012;485(7397):242-5. [PMID: 22495311]

29 Volk HE, Lurmann F, Penfold B, Hertz-Picciotto I, McConnell R. Traffic-related air pollution, particulate matter, and autism. JAMA Psychiatry. January 2013;70(1):71-7. [PMID: 23404082]

30 Shelton JF, Hertz-Picciotto I, Pessah IN. Tipping the balance of autism risk: potential mechanisms linking pesticides and autism. Environ Health Perspect. July 2012;120(7):944-51. [PMID: 22534084]

31 Croen LA, Grether JK, Yoshida CK, Odouli R, Hendrick V. Antidepressant use during pregnancy and childhood autism spectrum disorders. Arch Gen Psychiatry. November 2011;68(11):1104-12. [PMID: 21727247]

32 Newschaffer CJ, Croen LA, Fallin MD, Hertz-Picciotto I, Nguyen DV, Lee NL, Berry CA, Farzadegan H, Hess HN, Landa RJ, Levy SE, Massolo ML, Meyerer SC,Mohammed SM, Oliver MC, Ozonoff S, Pandey J, Schroeder A, Shedd-Wise KM. Infant siblings and the investigation of autism risk factors. J Neurodev Disord. April 18, 2012;4(1):7. [PMID: 22958474]

33 Kakooza-Mwesige A, Ssebyala K, Karamagi C, Kiguli S, Smith K, Anderson MC, Croen LA, Trevathan E, Hansen R, Smith D, Grether JK. Adaptation of the 'ten questions' to screen for autism and other neuro-developmental disorders in Uganda. Autism. November 8, 2013. [PMID: 23536263]

34 Rahbar MH, Samms-Vaughan M, Loveland KA, Pearson DA, Bressler J, Chen Z, Ardjomand-Hessabi M, Shakespeare-Pellington S, Grove ML, Beecher C,Bloom K, Boerwinkle E. Maternal and paternal age are jointly associated with childhood autism in Jamaica. J Autism Dev Disord. September 2012;42(9):1928-38. [PMID: 22230961]

35 Rahbar MH, Samms-Vaughan M, Loveland KA, Ardjomand-Hessabi M, Chen Z, Bressler J, Shakespeare-Pellington S, Grove ML, Bloom K, Pearson DA, Lalor GC, Boerwinkle E. Seafood consumption and blood mercury concentrations in Jamaican children with and without autism spectrum disorders. Neurotox Res. January 2013;23(1):22-38. [PMID: 22488160]

36 Malkova NV, Yu CZ, Hsiao EY, Moore MJ, Patterson PH. Maternal immune activation yields offspring displaying mouse versions of the three core symptoms of autism. Brain Behav Immun. May 2012;26(4):607-16. [PMID: 22310922]

37 Roberts AL, Lyall K, Hart JE, Laden F, Just AC, Bobb JF, Koenen KC, Ascherio A, Weisskopf MG. Perinatal air pollutant exposures and autism spectrum disorder in the children of nurses' health study II participants. Environ Health Perspect. August 2013;121(8):978-84. [PMID: 23816781]

38 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. February 9, 2007; 56(SS-1):1-11. [PMID: 17287714]

39 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. February 9, 2007; 56(SS-1):12-28. [PMID: 17287715]

40 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. December 18, 2009; 58(Vol. 10):1-20. [PMID: 20023608]

41 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. March 20, 2012; 61 (SS-03): 1-19. [PMID: 22456193]

42 Durkin MS, Maenner MJ, Meaney FJ, Levy SE, Diguiseppi C, Nicholas JS, Kirby RS, Pinto-Martin JA, Schieve LA. Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study., PLoS One. July 2010. 12;5(7):e 11551. [PMID: 20634960]

43 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. March 20, 2012; 61 (SS-03): 1-19. [PMID: 22456193]

44 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. December 18, 2009; 58(Vol. 10):1-20. [PMID: 20023608]

45 Warren Z, Veenstra-VanderWeele J, Stone W, Bruzek JL, Nahmias AS, Foss-Feig JH, Jerome RN, Krishnaswami S, Sathe NA, Glasser AM, Surawicz T,McPheeters ML. Therapies for Children With Autism Spectrum Disorders. AHRQ Comparative Effectiveness Reviews. Rockville (MD): Agency for Healthcare Research and Quality (US); April 2011. Report No.: 11-EHC029-EF. [PMID: 21834171]

46 Dove D, Warren Z, McPheeters ML, Taylor JL, Sathe NA, Veenstra-VanderWeele J. Medications for adolescents and young adults with autism spectrum disorders: a systematic review. Go to website disclaimer  Pediatrics. October 2012;130(4):717-26. [PMID: 23008452]

47 Young J, Corea C, Kimani J, Mandell D. Autism Spectrum Disorders (ASDs) Services: Final Report on Environmental Scan. Go to website disclaimer  (PDF - 2.44 MB) Prepared for the Centers for Medicare & Medicaid Services, United States Department of Health and Human Services. March 9, 2010.

48 Fitzpatrick LB, Minshew NJ, and Eack SM. 2013 Mar. A systematic review of psychosocial interventions for adults with autism spectrum disorders. J Autism Develop Disorders. March 2013 (43) 687-94. [PMID: 22825929]

49 Eack SM, Bahorik, AL, Hogarty SS, Greenwald DP, Litschge MY, Mazefsky CA, Minshew NJ. Is cognitive rehabilitation needed in verbal adults with autism? Insights from initial enrollment in a trial of cognitive enhancement therapy. J Autism Develop Disorders. September 2013. 43(9):2233-7. [PMID: 23381484]

50 Wainer A and Ingersoll B. Disseminating ASD interventions: a pilot study of a distance learning program for parents and professionals. J Autism Develop Disorders. January 2013 (43) 11-24 [PMID: 22547028]

51 Strain, PS, & Bovey II, EH. Randomized, controlled trial of the LEAP model of early intervention for young children with autism spectrum disorders. (PDF - 920 KB) Topics in Early Childhood Special Education. 2011. 31(3), 133–154.

52 Kanne SM, Mazurek MO, Sikora D, Bellando J, Branum-Martin L, Handen B, Katz T, Freedman B, Powell MP, Warren Z. The Autism Impact Measure (AIM): Initial Development of a New Tool for Treatment Outcome Measurement. J Autism Dev Disord. January 2014. 44(1):168-79 [PMID: 23748386]

53 Malow BA, Adkins KW, Reynolds A, Weiss SK, Loh A, Fawkes D, Katz T, Goldman SE, Madduri N, Hundley R, Clemons T. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. J Autism Dev Disord. January 2014. 44(1):216-28. [PMID: 23754339]

54 Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, Donaldson A, Varley J. Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model.Go to website disclaimer  Pediatrics. January 2010;125(1):e17-23. [PMID: 19948568]

55 Dawson G, Jones EJ, Merkle K, Venema K, Lowy R, Faja S, Kamara D, Murias M, Greenson J, Winter J, Smith M, Rogers SJ, Webb SJ. Early behavioral intervention is associated with normalized brain activity in young children with autism. J Am Acad Child Adolesc Psychiatry. November 2012;51(11):1150-9. [PMID: 23101741]

56 Kasari C, Rotheram-Fuller E, Locke J, Gulsrud A. Making the connection: randomized controlled trial of social skills at school for children with autism spectrum disorders. J Child Psychol Psychiatry. April 2012;53(4):431-9. [PMID: 22118062]

57 Landa RJ, Holman KC, O'Neill AH, Stuart EA. Intervention targeting development of socially synchronous engagement in toddlers with autism spectrum disorder: a randomized controlled trial. J Child Psychol Psychiatry. January 2011;52(1):13-21. [PMID: 21126245]

58 Kasari C, Gulsrud A, Freeman S, Paparella T, Hellemann G. Longitudinal follow-up of children with autism receiving targeted interventions on joint attention and play. J Am Acad Child Adolesc Psychiatry. May 2012;51(5):487-95. [PMID: 22525955]

59 Faja S, Webb SJ, Jones E, Merkle K, Kamara D, Bavaro J, Aylward E, Dawson G. The effects of face expertise training on the behavioral performance and brain activity of adults with high functioning autism spectrum disorders. J Autism Dev Disord. February 2012;42(2):278-93. [PMID: 21484517]

60 Fein D, Barton M, Eigsti IM, Kelley E, Naigles L, Schultz RT, Stevens M, Helt M, Orinstein A, Rosenthal M, Troyb E, Tyson K. Optimal outcome in individuals with a history of autism. J Child Psychol Psychiatry. February 2013;54(2):195-205. [PMID: 23320807]

61 Dölen G, Osterweil E, Rao BS, Smith GB, Auerbach BD, Chattarji S, Bear MF. Correction of fragile X syndrome in mice. Neuron. December 2007. 20;56(6):955-62. [PMID: 18093519]

62 Young J, Corea C, Kimani J, Mandell D. Autism Spectrum Disorders (ASDs) Services: Final Report on Environmental Scan. Go to website disclaimer  (PDF - 2.44 MB) Prepared for the Centers for Medicare & Medicaid Services, United States Department of Health and Human Services. March 9, 2010.

63 Cox NB, Reeve RE, Cox SM, Cox DJ. Brief report: driving and young adults with ASD: parents' experiences. J Autism Dev Disord. October 2012;42(10):2257-62. [PMID: 22359179]

64 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. March 20, 2012; 61 (SS-03): 1-19. [PMID: 22456193]

65 U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Summary & Highlights: Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – FY 2009). April 2011.

66 Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research—2012 Update. December 2012.

67 Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2008 IACC Autism Spectrum Disorder Research Portfolio Analysis Report.

68 Office of Autism Research Coordination, National Institute of Mental Health & Acclaro Research Solutions, Inc., on behalf of the Interagency Autism Coordinating Committee (IACC). 2009 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. June 2011.

69 Interagency Autism Coordinating Committee (IACC). 2012 IACC Summary of Advances in Autism Spectrum Disorder Research. April 2012.

70 Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. December 18, 2009; 58(Vol. 10):1-20. [PMID: 20023608]

71 Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, Donaldson A, Varley J. Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics. January 2010;125(1):17-23. [PMID: 19948568]

72 Wood J. J., Drahota A., Sze K., Har K., Chiu A. and Langer D. A. Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: a randomized, controlled trial. Journal of Child Psychology and Psychiatry. March 2009;50(3): 224–234. [PMID: 19309326]

73 Posey DJ, Aman MG, McCracken JT, Scahill L, Tierney E, Arnold LE, Vitiello B, Chuang SZ, Davies M, Ramadan Y, Witwer AN, Swiezy NB, Cronin P, Shah B ,Carroll DH, Young C, Wheeler C, McDougle CJ. Positive effects of methylphenidate on inattention and hyperactivity in pervasive developmental disorders: analysis of secondary measures. Biological Psychiatry. February 2007;61(4):538-44. [PMID: 17276750]

74 Aman MG, Hollway JA, McDougle CJ, Scahill L, Tierney E, McCracken JT, Arnold LE, Vitiello B, Ritz L, Gavaletz A, Cronin P, Swiezy N, Wheeler C, Koenig K, Ghuman JK, Posey DJ. Cognitive effects of risperidone in children with autism and irritable behavior. J Child Adolesc Psychopharmacol. June 2008;18(3):227-36. [PMID: 18582177]

75 Young J, Corea C, Kimani J, Mandell D. Autism Spectrum Disorders (ASDs) Services: Final Report on Environmental Scan. Go to website disclaimer  (PDF - 2.44 MB) Prepared for the Centers for Medicare & Medicaid Services, United States Department of Health and Human Services. March 9, 2010.

76 Mauch D, Pfefferle S, Booker C, Pustell M, Levin J. Prepared for the Centers for Medicare & Medicaid Services, United States Department of Health and Human Services. Report on State Services to Individuals with Autism Spectrum Disorders (ASD). (PDF - 884 KB) April 1, 2011.

77 Please note that in 2012,the Administration on Developmental Disabilities (ADD), became the Administration for Intellectual and Developmental Disabilities (AIDD), which is a component of the Administration for Community Living, also formed in 2012.

78 U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – FY 2009). December 2010 (Rev. April 2011).

Appendix i. List of Acronyms

  • ABA-Applied Behavioral Analysis
  • ACC-Autism Coordinating Committee
  • ACE-Autism Centers of Excellence
  • ACF-Administration for Children and Families
  • ACL-Administration for Community Living
  • ADDM-Autism and Developmental Disabilities Monitoring Network
  • ADFM-Active Duty Family Member
  • AGRE-Autism Genetic Resource Exchange
  • AHRQ-Agency for Healthcare Research & Quality
  • AIDD-Administration on Intellectual and Developmental Disabilities
  • AIR-P-Autism Intervention Research Network on Physical Health
  • AIR-B-Autism Intervention Research Network on Behavioral Health
  • ARRA-American Recovery and Reinvestment Act
  • ASD-Autism Spectrum Disorder
  • ATP-Autism Tissue Program
  • AUCD-Association of University Centers on Disabilities
  • CAA-Combating Autism Act of 2006
  • CAAC-Computer Assisted Autism Care
  • CAAI-Combating Autism Act Initiative
  • CADDRE-Centers for Autism and Developmental Disabilities Research and Epidemiology Network
  • CAM-Complementary and Alternative Medicine
  • CARA-Combating Autism Reauthorization Act of 2011
  • CDC-Centers for Disease Control and Prevention
  • CDMRP-Congressionally Directed Medical Research Programs
  • CERT-Center for Education and Research on Mental Health Therapeutics
  • CHICA-Child Health Improvement through Computer Automation
  • CER-Comparative Effectiveness Review
  • CMHI-Child Mental Health Initiative
  • CMS-Centers for Medicare & Medicaid Services
  • CPRC-Community Parent Resource Center
  • DBP-Developmental Behavioral Pediatrics
  • DBPNet-Developmental Behavioral Pediatrics Research Network
  • DDC-Developmental Disabilities Council
  • DIRP-Division of Intramural Research Program
  • DoD-Department of Defense
  • DoD-ARP-Department of Defense Autism Research Program
  • DoD-AF-Department of Defense Air Force
  • DSM-Diagnostic and Statistical Manual of Mental Disorders
  • EARLI-Early Autism Risk Longitudinal Investigation
  • ECHO-Extended Care Health Option
  • ED-Department of Education
  • EFMP-Exceptional Family Member Program
  • EHR-Electronic Health Record
  • EPA-Environmental Protection Agency
  • EPSDT-Early and Periodic Screening, Diagnosis, and Treatment Program
  • ESDM-Early Start Denver Model
  • FACA-Federal Advisory Committee Act
  • FAST-AS-Fast-Fail Trials in Autism Spectrum Disorders
  • FDA-Food and Drug Administration
  • FIC-Fogarty International Center
  • FXS-Fragile X Syndrome
  • HCBS-Home and Community-Based Services
  • HCUP-Hospital Cost and Utilization Project
  • HHS-Department of Health and Human Services
  • HRSA-Health Resources and Services Administration
  • IC-NIH Institutes and Centers
  • IACC-Interagency Autism Coordinating Committee
  • IAN-Interactive Autism Network
  • IBIS-Infant Brain Imaging Study
  • ICDR-Interagency Committee on Disability Research
  • IDEA-Individuals with Disabilities Education Act
  • IES-Institute of Education Sciences
  • INCLEN-International Clinical Epidemiology Network
  • IOM-Institute of Medicine
  • LEAP-Learning Experiences—An Alternative Program for Preschoolers and Parents
  • LEND-Leadership Education in Neurodevelopmental Disabilities
  • LTSAE-Learn the Signs. Act Early.
  • MADDSP-Metropolitan Atlanta Developmental Disabilities Surveillance Program
  • M-CHAT-Modified Checklist for Autism in Toddlers
  • MCHB-Maternal and Child Health Bureau
  • MCO-Managed Care Organization
  • MHS-Military Health Systems
  • NADFM-Non-Active Duty Family Member
  • NCBDDD-National Center on Birth Defects and Developmental Disabilities
  • NCI-National Cancer Institute
  • NCRR-National Center for Research Resources
  • NCSER-National Center for Special Education Research
  • NEI-National Eye Institute
  • NHGRI-National Human Genome Research Institute
  • NIA-National Institute on Aging
  • NIAAA-National Institute on Alcohol Abuse and Alcoholism
  • NIAID-National Institute of Allergy and Infectious Diseases
  • NIBIB-National Institute of Biomedical Imaging and Bioengineering
  • NICHD-Eunice Kennedy Shriver National Institute of Child Health and Human Development
  • NIDA-National Institute on Drug Abuse
  • NIDCD-National Institute on Deafness and Other Communication Disorders
  • NIDCR-National Institute of Dental and Craniofacial Research
  • NIDDK-National Institute of Diabetes and Digestive and Kidney Diseases
  • NIDRR-National Institute on Disability and Rehabilitation Research
  • NIEHS-National Institute of Environmental Health Sciences
  • NIGMS-National Institute of General Medical Sciences
  • NIH-National Institutes of Health
  • NIH RePORT-NIH Research Portfolio Online Reporting Tool
  • NIMH-National Institute of Mental Health
  • NINDS-National Institute of Neurological Disorders and Stroke
  • NINR-National Institute of Nursing Research
  • NDAR-National Database for Autism Research
  • NLM-National Library of Medicine
  • NSCH-National Survey of Children's Health
  • NSF-National Science Foundation
  • OARC-Office of Autism Research Coordination
  • OD-Office of the Director, NIH
  • ONC-HHS National Coordinator for Health Information Technology
  • OPE-Office of Postsecondary Education
  • ORR-Office of Refugee Resettlement
  • OSEP-Office of Special Education Programs
  • OSERS-Office of Special Education and Rehabilitative Services
  • PBIS-Positive Behavioral Interventions and Supports
  • PCPID-President's Committee for People with Intellectual Disabilities
  • PDD-Pervasive Developmental Disorders
  • PNS-Projects of National Significance
  • PTI-Parent Training and Information Centers
  • RSA-Rehabilitation Services Administration
  • SAMHSA-Substance Abuse and Mental Health Services Administration
  • SBIR-Small Business Innovation Research
  • SCDD-State Councils on Developmental Disabilities
  • SDAS-Secondary Data Analysis Studies
  • SEED-Study to Explore Early Development
  • SIG-State Implementation Grantee
  • SPHARC-State Public Health Autism Resource Center
  • SPG-State Planning Grants
  • TEACCH-Treatment and Education of Autistic and Related Communication Handicapped Children
  • UCEDD-University Centers for Excellence in Developmental Disabilities Education, Research, and Service
  • USDA-U.S. Department of Agriculture
  • USPSTF-U.S. Preventative Services Task Force
  • WIC-Special Supplemental Nutrition Program for Women, Infants, and Children

Appendix ii. Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – FY 2009): Summary & Highlights 65

Cross-Agency Coordination

Expansion of ASD Research

  • The National Institutes of Health (NIH) used American Recovery and Reinvestment Act (ARRA) funds to support nearly $64 million in new autism research projects in 2009, and committed another $58 million in ARRA funding to autism in 2010, bringing the total ARRA investment in autism research for both fiscal years to $122 million. New research supported including studies on development and testing of diagnostic screening tools for different populations; assessing risk from prenatal or early life exposures; initiating clinical trials to test early interventions; and adapting existing, effective pediatric treatments for older children, teens, and adults with ASD.

ASD Surveillance, Awareness, and Outreach

  • In 2009, CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network published the most recent autism prevalence data indicating that 1 in 110 children in the U.S. has an autism spectrum disorder.70 Since 2006, the ADDM Network has been tracking and providing the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the U.S.
  • CDC's "Learn the Signs. Act Early." campaign has played an important role in raising awareness nationwide among parents, health care professionals, and early educators about the importance of monitoring a child's developmental milestones, identifying developmental delays, and providing appropriate early interventions.
  • The Department of Education's 106 Parent Training and Information Centers Go to website disclaimer  provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with them. This assistance helps parents to participate more effectively with professionals in meeting their children's educational needs.
  • NIH's Autism Centers of Excellence (ACE) were expanded under the CAA and now comprise 11 research centers and networks at major research institutions and universities across the country that are actively working to identify the causes of ASD and develop new and improved treatments.
  • NIH launched the Early Autism Risk Longitudinal Investigation (EARLI) Go to website disclaimer  study to follow and collect comprehensive data on ~1,200 families that already have a child with an ASD who are pregnant, or who might become pregnant in the future, to determine the role of environmental factors and genetic predisposition in the cause of ASD.

Investigating the Causes of Autism

  • CDC's Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) network supports the Study to Explore Early Development (SEED) program, which is the largest study in the United States dedicated to identifying factors that put children at risk for autism (including genes, health conditions, and environmental exposures). SEED will include ~ 2,700 children, 2 through 5 years of age, as well as their parents, representing diverse groups from six areas across the country.
  • CDC's Blood Spot Project is collecting, banking, and testing dried blood spots from newborn infants to determine whether the developing fetus has been exposed to harmful antibodies that may have had a role in causing ASD.
  • NIH is accelerating the pace of ASD research discoveries through large-scale, unprecedented resource and data-sharing initiatives, including National Database for Autism Research (NDAR) and the NIMH Genetics Repository, Go to website disclaimer  which gather, standardize, and disseminate ASD research participant data and biological samples from thousands of human subjects participating in research projects.

Development of Evidence-Based Autism Treatments

Innovative Intervention Investments

High-Quality Training of ASD Practitioners and Service Providers

Best Practices in Service Provision

  • In 2007, CMS issued three "Promising Practices" papers on ASD to highlight innovative service provision systems and practices: California - Single Process for Early Diagnosis and Service Delivery, Connecticut - Pilot Program for Non-Medicaid Eligible Young Adults with ASD, and Delaware - Supported Employment Program for Adults with ASD.
  • In 2009, AHRQ initiated support for an ongoing randomized trial of Child Health Improvement through Computer Automation (CHICA), a computer decision support program to aid implementation of clinical guidelines in pediatric practice. The CHICA program is designed to streamline and improve the screening, diagnosis, and management of ASD symptoms by clinicians.
  • In 2010, CMS released the Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan, (PDF - 2 MB) providing a comprehensive review of scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related psychosocial services and supports for children, transitioning youth, and adults with ASD.75
  • In 2011, CMS plans to release two studies that will highlight available services and best practices being implemented across the United States. The Report on State Services to Individuals with Autism Spectrum Disorders (ASD) (PDF - 884 KB) is an assessment of the implementation of evidence-based/promising practices through the lens of state experience across nine states. The State of the States on ASD study will assess existing state programs and supports for families living with ASD in 50 states and the District of Columbia, providing a comprehensive view of services available through state programs across the country.76

ASD Services and Supports across the Lifespan

  • SAMHSA oversees the Congressionally-mandated Comprehensive Community Mental Health Services for Children and Their Families Program (the short title for this program is Child Mental Health Initiative (CMHI)) which provides funding for the development and evaluation of formal treatments and services, including natural and community supports that are wrapped around the child and family to promote full functioning in the community. Since 2002, the CMHI program has assisted 730 youths with ASD, representing 3.3 percent of all individuals served in the program.
  • Through funds provided by the Combating Autism Act Initiative (CAAI) under the CAA, HRSA established a State Public Health Coordinating Center for Autism to help states ensure that children and youth with ASD receive early and appropriate identification, diagnosis, and intervention services. In addition, nearly $2.7 million in grant funds was provided to nine states to assist them with improving services for these young people.
  • HRSA's Leadership Education in Neurodevelopmental Disabilities (LEND) training program has supported the development and dissemination of a widely used curriculum, called "My Future, My Plan: A Transition Planning Resource for Life After High School," Go to website disclaimer  to assist students, parents, and professionals in planning for a successful transition to adulthood.
  • The Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR) is supporting a model project to examine the impact of community-based work experiences on the employment outcomes of youth with autism, as well as postsecondary school participation and ultimate employment of college students with autism.
  • The Department of Education's Rehabilitation Services Administration (RSA) oversees grant programs that provide supports such as counseling, medical and psychological services, job training, and other individualized services to individuals with physical or mental disabilities to help them to obtain employment and live more independently. For example, in 2009, state vocational rehabilitation agencies supported by RSA grant funds served 6,434 individuals with autism and 2,314 individuals with autism were assisted to achieve an employment outcome.
  • SAMHSA has developed a toolkit to implement the evidence-based program, "Supported Employment," which is a system of services and supports for people with disabilities to enable them to secure and maintain jobs in the community. "Supported Employment" builds on the concept of "jobs first" or "place and train" which is different from traditional vocational rehabilitation and sheltered workshop concepts. This program provides job coaches, development and retention; assistive technology; specialized job training and individually tailored supervision. It also includes both development of employment opportunities and ongoing support for individuals to sustain employment. "Supported Employment" has made it possible for individuals with moderate-to-severe levels of disabilities to become active, productive wage-earners in the mainstream workforce.
  • The Department of Education is supporting projects that are investigating how technology can be used to enhance an individual's access to services and participation in community settings.
  • The Office on Disability recently established the Center of Excellence in Research on Disability Services, Care Coordination, and Integration to create data infrastructure to support and conduct comparative effectiveness research on health services and supports for people with disabilities, including autism. The Center is part of a national strategy for quality improvement in health care and the expansion of health care delivery system research with a focus on person-centered outcomes research.
  • ACF's Administration on Developmental Disabilities (ADD)77 supports the State Councils on Developmental Disabilities (SCDD), which are independent state bodies composed of key stakeholders, including individuals with developmental disabilities, family members, and representatives of state and non-governmental services agencies, that work to identify needs and support state services and activities that increase the independence, productivity, inclusion, and community integration of people with developmental disabilities, including individuals with autism.
  • ACF's Administration on Developmental Disabilities (ADD) manages the Protection & Advocacy (P&A) Agencies program which supports agencies in each state to that protect the legal and human rights of people with autism and other developmental disabilities. The P&As empower people by offering information and referral services for legal, administrative, and other remedies to resolve problems and by investigating incidents of abuse and neglect and discrimination based on disability.
  • In 2011, ACF's Administration on Developmental Disabilities (ADD) will launch the Autism NOW National Autism Resource and Information Center, providing access to high-quality resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and an innovative web presence.

To access the complete report, please refer to the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006- FY 2009).78

Appendix iii. CDC-supported Autism Publications (2010 to August 2013)

Anderson C, Law JK, Daniels A, Rice C, Mandell DS, Hagopian L, Law PA. Occurrence and family impact of elopement in children with autism spectrum disorders. Go to website disclaimer  Pediatrics. 2012 Nov;130(5):870-7. [PMID: 23045563]

Atladóttir HÓ, Henriksen TB, Schendel DE, Parner ET. Autism after infection, febrile episodes, and antibiotic use during pregnancy: an exploratory study. Go to website disclaimer  Pediatrics. Dec;130(6):e1447-54. [PMID: 23147969]

Atladóttir HÓ, Henriksen TB, Schendel DE, Parner ET. Using maternally reported data to investigate the association between early childhood infection and autism spectrum disorder: the importance of data source. Paediatric and Perinatal Epidemiology. July 2012;26(4):373-85. [PMID: 22686389]

Atladóttir HÓ, Schendel DE, Lauritsen MB, Henriksen TB, Parner ET. Patterns of contact with hospital for children with an autism spectrum disorder: a Danish register-based study. Journal of Autism Developmental Disorders. 2012 Aug;42(8):1717-28. [PMID: 22160299]

Atladóttir HÓ, Thorsen P, Østergaard L, Schendel DE, Lemcke S, Abdallah M, Parner ET. Maternal infection requiring hospitalization during pregnancy and autism spectrum disorders. Journal of Autism and Developmental Disorders. 2010 Dec;40(12):1423-30. [PMID: 20414802]

Avchen R, Wiggins LD, Devine O, Van Naarden-Braun K, Rice C, Hobson N, Schendel D, Yeargin-Allsopp M. Evaluation of a records-review surveillance system used to determine the prevalence of autism spectrum disorders. Journal of Autism and Developmental Disorders. Feb 2011;41(2):227-36. [PMID:20568003]

Berry RJ, Crider KS, Yeargin-Allsopp M. Periconceptional folic acid and risk of autism spectrum disorders. Journal of the American Medical Association. Feb 13;309(6):611-3. [PMID: 23403688]

Boyle CA, Boulet S, Schieve L, Cohen RA, Blumberg SJ, Yeargin-Allsopp M, Visser S, Kogan MD. Trends in the Prevalence of Developmental Disabilities in US Children, 1997 - 2008. Go to website disclaimer  Pediatrics. 2011 Jun;127(6):1034-42. [PMID: 21606152]

Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report Surveillance Summaries. December 18, 2009;58(Vol. 10):1-20. [PMID: 20023608]

Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report. March 30, 2012. 61(SS03); 1-19. [PMID: 22456193]

Cheely CA, Carpenter LA, Letourneau EJ, Nicholas JS, Charles J, King LB. The prevalence of youth with autism spectrum disorders in the criminal justice system. Journal of Autism and Developmental Disorders. 2012 Sep;42(9):1856-62. [PMID: 22187108]

Christensen J, Grønborg TK, Sørensen MJ, Schendel D, Parner ET, Pedersen LH, Vestergaard M. Prenatal valproate exposure and risk of autism spectrum disorders and childhood autism: a population-based study. Journal of the American Medical Association. 2013 Apr 24;309(16):1696-703. [PMID: 23613074]

Durkin MS, Maenner MJ, Meaney FJ, Levy SE, Diguiseppi C, Nicholas JS, Kirby RS, Pinto-Martin JA, Schieve LA. Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study., Go to website disclaimer  PLoS One. July 12, 2010;5(7):e 11551. [PMID: 20634960]

Giarelli E, Wiggins LD, Rice CE, Levy SE, Kirby, RS, Pinto-Martin J, Mandell D. Sex differences in the evaluation and diagnosis of autism spectrum disorders among children. Disability and Health Journal. April 2010;3(2):107-116. [PMID: 21122776]

Grinker, R. R., Yeargin-Allsopp, M., and Boyle, C. (2011). Culture and autism spectrum disorders: The impact on prevalence and recognition. In Autism spectrum disorders, edited by D. G. Amaral, G. Dawson, and D. H. Geschwind, pp. 112–136. New York: Oxford University Press, 2011.

Gronborg TK, Schendel DE, Parner ET. Recurrence of autism spectrum disorders in full and half siblings and trends over time: A population-based cohort study. JAMA Pediatr. 2013 Oct;167(10):947-53. [PMID: 23959427]

Hilton CL, Fitzgerald RT, Jackson KM, Maxim RA, Bosworth CC, Shattuck PT, Geschwind DH, Constantino JN. Brief report: Under-representation of African-Americans in autism genetic research: a rationale for inclusion of subjects representing diverse family structures. Journal of Autism and Developmental Disorders. May 2010;40(5):633-9. [PMID: 19936905]

Hoffman K, Kalkbrenner AE, Vieira VM, Daniels JL. The spatial distribution of known predictors of autism spectrum disorders impacts geographic variability in prevalence in central North Carolina. Environmental Health. 2012 Oct 31;11:80. [PMID: 23113973]

Hoffman K, Vieira VM, Daniels JL. Brief Report: Diminishing Geographic Variability in Autism Spectrum Disorders Over Time? Journal of Autism and Developmental Disorders. 2013 Aug 20. [Epub ahead of print] [PMID: 23959585]

Hvidtjørn D, Grove J, Schendel D, Schieve LA, Sværke C, Ernst E, Thorsen P. Risk of autism spectrum disorders in children born after assisted conception: a population-based follow-up study. Journal of Epidemiology and Community Health. 2011 Jun; 65(6):497-502. [PMID: 20584728]

Jarquin VG, Wiggins LD, Schieve LA, Van Naarden-Braun K. Racial disparities in community identification of autism spectrum disorders over time; Metropolitan Atlanta, Georgia, 2000-2006. Journal of Developmental and Behavioral Pediatrics. Apr;32(3):179-87. [PMID: 21293294]

Johnson NL, Giarelli E, Lewis C, Rice CE. Genomics and Autism Spectrum Disorder. Journal of Nursing Scholarship. 2013;45(1):69-78. [PMID: 23368711]

Kalkbrenner AE, Braun JM, Durkin MS, Maenner MJ, Cunniff C, Lee LC, Pettygrove S, Nicholas JS, Daniels JL. Maternal smoking during pregnancy and the prevalence of autism spectrum disorders, using data from the autism and developmental disabilities monitoring network. Environmental Health Perspectives. 2012 Jul;120(7):1042-8. [PMID: 22534110]

Kalkbrenner AE, Daniels JL, Chen JC, Poole C, Emch M, Morrissey J. Perinatal exposure to hazardous air pollutants and autism spectrum disorders at age 8. Epidemiology. September 2010; 21(5):631-641. [PMID: 20562626]

Kalkbrenner AE, Daniels JL, Emch M, Morrissey J, Poole C, Chen JC. Geographic access to health services and diagnosis with an autism spectrum disorder. Annals of Epidemiology. 2011 Apr;21(4):304-10. [PMID: 21376278]

Kancherla V, Van Naarden Braun K, Yeargin-Allsopp M. Childhood vision impairment, hearing loss and co-occurring autism spectrum disorder. Disability and Health Journal. 2013 Oct;6(4):333-42. [PMID: 24060256]

Lauritsen M, Jorgensen M, Madsen K, Lemcke S, Toft S, Grove J, Schendel D, Thorsen P. Validity of childhood autism in the Danish psychiatric central register - findings from a cohort sample born 1990-1999. Journal of Autism and Developmental Disorders. February 2010; 40(2):139-148. [PMID: 19728067]

Lauritsen MB, Astrup A, Pedersen CB, Obel C, Schendel DE, Schieve L, Yeargin-Allsopp M, Parner ET. Urbanicity and autism spectrum disorders. Journal of Autism and Developmental Disorders. 2013. [PMID: 23807204]

Levy S, Giarelli E, Lee L, Schieve L, Kirby R, Cunniff C, Nicholas J, Rice C. Autism spectrum disorders and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental & Behavioral Pediatrics. May 2010; 31(4):267-275. [PMID: 20431403]

Logan SL, Nicholas JS, Carpenter LA, King LB, Garrett-Mayer E, Charles JM. High prescription drug use and associated costs among Medicaid-eligible children with autism spectrum disorders identified by a population-based surveillance network. Annals of Epidemiology. 2012 Jan;22(1):1-8. [PMID: 22153288]

Lopez M, Schulz EG, Baroud T, Hudson A, Wilson M. J. The Arkansas Autism Developmental Disabilities Monitoring (AR ADDM) project: statewide autism surveillance in a rural state. The Journal of the Arkansas Medical Society. 2012 Mar;108(10):220, 222-4. [PMID: 22479981]

Maenner MJ, Arneson CL, Levy SE, Kirby RS, Nicholas JS, Durkin MS. Brief report: Association between behavioral features and gastrointestinal problems among children with autism spectrum disorder. Journal of Autism and Developmental Disorders. 2012 Jul;42(7):1520-5. [PMID: 22012246]

Maenner MJ, Schieve LA, Rice CE, Cunniff C, Giarelli E, Kirby RS, Lee LC, Nicholas JS, Wingate MS, Durkin MS. Frequency and pattern of documented diagnostic features and the age of autism identification. Journal of the American Academy of Child and Adolescent Psychiatry. 2013 Apr;52(4):401-413. [PMID: 23582871]

Miller JS, Bilder D, Farley M, Coon H, Pinborough-Zimmerman J, Jenson W, Rice CE, Fombonne E, Pingree CB, Ritvo E, Ritvo RA, McMahon WM. Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study. Journal of Autism and Developmental Disorders. 2013 Jan;43(1):200-10. [PMID: 22696195]

Nicholas JS, Carpenter LA, King LB, Jenner W, Wahlquist A, Logan S, Charles JM. Completeness of case ascertainment for surveillance of autism spectrum disorders using the autism developmental disabilities monitoring network methodology. Disability and Health Journal. 2012 Jul;5(3):185-9. [PMID: 22726859]

Parner ET, Baron-Cohen S, Lauritsen MB, Jørgensen M, Schieve LA, Yeargin-Allsopp M, Obel C. Parental Age and Autism Spectrum Disorders. Annals of Epidemiology. March 12, 2012. 22(3):143-50. [PMID: 22277122]

Peacock G, Amendah D, Ouyang L, Grosse S. Autism spectrum disorders and health care expenditures: The effects of co-occurring conditions. Journal of Developmental and Behavioral Pediatrics. January 2012. 33(1):2-8. [PMID: 22157409]

Perou R, Bitsko RH, Blumberg SJ, Pastor P, Ghandour RM, Gfroerer JC, Hedden SL, Crosby AE, Visser SN, Schieve LA, Parks SE, Hall JE, Brody D, Simile CM, Thompson WW, Baio J, Avenevoli S, Kogan MD, Huang LN. Mental health surveillance among children - United States, 2005-2011., Morbidity and Mortality Weekly Report, Surveillance Summaries. May 2013. [PMID: 23677130]

Pettygrove S, Pinborough-Zimmerman J, Meaney FJ, Van Naarden Braun K, Nicholas J, Miller L, Miller J, Rice C. Predictors of ascertainment of autism spectrum disorders across nine US communities. Journal of Autism and Developmental Disorders. 2013 Aug;43(8):1867-79. [PMID: 23239097]

Pinborough-Zimmerman J, Bakian AV, Fombonne E, Bilder D, Taylor J, McMahon WM. Changes in the administrative prevalence of autism spectrum disorders: contribution of special education and health from 2002-2008. Journal of Autism and Developmental Disorders. 2012 Apr;42(4):521-30. [PMID: 21538173]

Pinborough-Zimmerman J, Bilder D, Bakian A, Satterfield R, Carbone PS, Nangle BE, Randall H, McMahon WM. Sociodemographic risk factors associated with autism spectrum disorders and intellectual disability. Autism Research. 2011 Dec;4(6):438-48. [PMID: 21905245]

Powell KC, Van Naarden Braun K, Singh RH, Shapira SK, Olney RS, Yeargin-Allsopp M. Prevalence of developmental disabilities and receipt of special education services among children with an inborn error of metabolism. Journal of Pediatrics. 2010;156:420-426. [PMID: 19914633]

Rice C, Nicholas J, Baio J, Pettygrove S, Lee L, Van Naarden Braun K, Doernberg N, Cunniff C, Newschaffer C, Meaney FJ, Charles J, Washington A, King L, Kolotos M, Mancilla K, Mervis CA, Carpenter L, Yeargin-Allsopp M. Changes in autism spectrum disorder prevalence in 4 areas of the United States. Disability and Health Journal. July 2010; 3(3):186-201. [PMID: 21122784]

Schendel DE, Diguiseppi C, Croen LA, Fallin MD, Reed PL, Schieve LA, et al. The Study to Explore Early Development (SEED): A Multisite Epidemiologic Study of Autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. Journal of Autism and Developmental Disorders. 2012 Oct;42(10):2121-40. [PMID: 22350336]

Schieve LA, Baio J, Rice CE, Durkin M, Kirby RS, Drews-Botsch C, Miller LA, Nicholas JS, Cunniff C. Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors. Disability and Health Journal. July 2010; 3(3):202-212. [PMID: 21122785]

Schieve LA, Boulet SL, Blumberg SJ, Kogan MD, Yeargin-Allsopp M, Boyle CA, Visser SN, Rice C. Association between parental nativity and autism spectrum disorder among US-born non-Hispanic white and Hispanic children, 2007 National Survey of Children's Health. Disability and Health Journal. January 2012. 5(1):18-25. [PMID: 22226294]

Schieve LA, Boulet SL, Kogan MD, Yeargin-Allsopp M, Boyle CA, Visser SN, Blumberg SJ, Rice C. Parenting aggravation and autism spectrum disorders: 2007 National Survey of Children's Health. Disability and Health Journal. 2011 Jul;4(3):143-52. [PMID: 21723521]

Schieve LA, Rice C, Devine O, Maenner MJ, Lee LC, Fitzgerald R, Wingate MS, Schendel D, Pettygrove S, Van Naarden Braun K, Durkin M. Have Secular Changes in Perinatal Risk Factors Contributed to the Recent Autism Prevalence Increase? Development and Application of a Mathematical Assessment Model. Annals of Epidemiology. Dec;21(12):930-45. [PMID: 22000328]

Schieve LA, Rice C, Yeargin-Allsopp M, Boyle CA, Kogan MD, Drews C, Devine O. Parent-Reported Prevalence of Autism Spectrum Disorders in US-Born Children: An Assessment of Changes within Birth Cohorts from the 2003 to the 2007 National Survey of Children's Health. Maternal and Child Health Journal. 2012 Apr;16 Suppl 1:S151-7. [PMID: 22476793]

Sell NK, Giarelli E, Blum N, Hanlon AL, Levy SE. A comparison of autism spectrum disorder DSM-IV criteria and associated features among African American and white children in Philadelphia County. Disability and Health Journal. 2012 Jan;5(1):9-17. [PMID: 22226293]

Tang YL, Guo Y, Lee LC, Rice CE, Wang YF, Cubells JF, Wu YY. Autism Diagnostic Observation Schedule (ADOS)--A Standardized direct observation assessment for autism spectrum disorders. Go to website disclaimer  International Journal of Psychiatry. 2010:37(1). Please note that this publication is in Mandarin Chinese.

Thomas P, Zahorodny W, Peng B, Kim S, Jani N, Halperin W, Brimacombe M. The association of autism diagnosis with socioeconomic status. Autism. 2012 Mar;16(2):201-13. [PMID: 21810908]

Wiggins LD, Baio J, Schieve L, Lee LC, Nicholas J, Rice CE. Retention of autism spectrum diagnoses by community professionals: findings from the autism and developmental disabilities monitoring network, 2000 and 2006. Journal of Developmental and Behavioral Pediatrics. June 2012;33(5):387-95. [PMID: 22580734]

Wiggins LD, Robins DL, Yeargin-Allsopp M. Short report: Improving record-review surveillance of young children with an autism spectrum disorder. Autism. 2013 Sep;17(5):623-9. [PMID: 22987886]

NIH publication No. 14-8012

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website at: http://iacc.hhs.gov/publications/report-to-congress/2012/

Appendices

 
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