IACC Strategic Plan

For Autism Research, Services, and Policy

2021-2023

Table of Contents | Appendices | News Release

Appendices

Chapter 1: Screening and Diagnosis

Maenner MJ, Shaw KA, Bakian AV, Bilder DA, Durkin MS, Esler A, Furnier SM, Hallas L, Hall-Lande J, Hudson A, Hughes MM, Patrick M, Pierce K, Poynter JN, Salinas A, Shenouda J, Vehorn A, Warren Z, Constantino JN, DiRienzo M, Fitzgerald RT, Grzybowski A, Spivey MH, Pettygrove S, Zahorodny W, Ali A, Andrews JG, Baroud T, Gutierrez J, Hewitt A, Lee LC, Lopez M, Mancilla KC, McArthur D, Schwenk YD, Washington A, Williams S, Cogswell ME. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021 Dec 3;70(11):1-16. [PMID: 34855725]
Campbell K, Carpenter KLH, Espinosa S, Hashemi J, Qiu Q, Tepper M, Calderbank R, Sapiro G, Egger HL, Baker JP, Dawson G. Use of a Digital Modified Check-list for Autism in Toddlers - Revised with Follow-up to Improve Quality of Screening for Autism. J Pediatr. 2017 Apr;183(133-139.e1. [PMID: 28161199]
Steinman KJ, Stone WL, Ibañez LV, Attar SM. Reducing Barriers to Autism Screening in Community Primary Care: A Pragmatic Trial Using Web-Based Screening. Acad Pediatr. 2022 Mar;22(2):263-270. [PMID: 33901728]
Major S, Campbell K, Espinosa S, Baker JP, Carpen-ter KL, Sapiro G, Vermeer S, Dawson G. Impact of a digital Modified Checklist for Autism in Toddlers-Revised on likelihood and age of autism diagnosis and referral for developmental evaluation. Autism. 2020 Oct;24(7):1629-1638. [PMID: 32466674]
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Meera SS, Donovan K, Wolff JJ, Zwaigenbaum L, Elison JT, Kinh T, Shen MD, Estes AM, Hazlett HC, Watson LR, Baranek GT, Swanson MR, St John T, Burrows CA, Schultz RT, Dager SR, Botteron KN, Pandey J, Piven J. Towards a Data-Driven Approach to Screen for Autism Risk at 12 Months of Age. J Am Acad Child Adolesc Psychiatry. 2021 Aug;60(8):968-977. [PMID: 33161063]
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Girault JB, Donovan K, Hawks Z, Talovic M, Forsen E, Elison JT, Shen MD, Swanson MR, Wolff JJ, Kim SH, Nishino T, Davis S, Snyder AZ, Botteron KN, Estes AM, Dager SR, Hazlett HC, Gerig G, McKinstry R, Pandey J, Schultz RT, St John T, Zwaigenbaum L, Todorov A, Truong Y, Styner M, Pruett JR, Jr., Constantino JN, Piven J. Infant Visual Brain Development and Inherited Genetic Liability in Autism. Am J Psychiatry. 2022 Aug;179(8):573-585. [PMID: 35615814]
Emerson RW, Adams C, Nishino T, Hazlett HC, Wolff JJ, Zwaigenbaum L, Constantino JN, Shen MD, Swanson MR, Elison JT, Kandala S, Estes AM, Botteron KN, Collins L, Dager SR, Evans AC, Gerig G, Gu H, McKinstry RC, Paterson S, Schultz RT, Styner M, Schlaggar BL, Pruett JR, Jr., Piven J. Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age. Sci Transl Med. 2017 Jun 7;9(393). [PMID: 28592562]
Hazlett HC, Gu H, Munsell BC, Kim SH, Styner M, Wolff JJ, Elison JT, Swanson MR, Zhu H, Botteron KN, Collins DL, Constantino JN, Dager SR, Estes AM, Evans AC, Fonov VS, Gerig G, Kostopoulos P, McKinstry RC, Pandey J, Paterson S, Pruett JR, Schultz RT, Shaw DW, Zwaigenbaum L, Piven J. Early brain development in infants at high risk for autism spectrum disorder. Nature. 2017 Feb 15;542(7641):348-351. [PMID: 28202961]
Shen MD, Kim SH, McKinstry RC, Gu H, Hazlett HC, Nordahl CW, Emerson RW, Shaw D, Elison JT, Swanson MR, Fonov VS, Gerig G, Dager SR, Botteron KN, Paterson S, Schultz RT, Evans AC, Estes AM, Zwaigenbaum L, Styner MA, Amaral DG, Piven J, Hazlett HC, Chappell C, Dager S, Estes A, Shaw D, Botteron K, McKinstry R, Constantino J, Pruett J, Schultz R, Zwaigenbaum L, Elison J, Evans AC, Collins DL, Pike GB, Fonov V, Kostopoulos P, Das S, Gerig G, Styner M, Gu H, Piven J. Increased Extra-axial Cerebrospinal Fluid in High-Risk Infants Who Later Develop Autism. Biol Psychiatry. 2017 Aug 1;82(3):186-193. [PMID: 28392081]
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Zwaigenbaum L, Bauman ML, Stone WL, Yirmiya N, Estes A, Hansen RL, McPartland JC, Natowicz MR, Choueiri R, Fein D, Kasari C, Pierce K, Buie T, Carter A, Davis PA, Granpeesheh D, Mailloux Z, Newschaffer C, Robins D, Roley SS, Wagner S, Wetherby A. Early Identification of Autism Spectrum Disorder: Recommendations for Practice and Research. Pediatrics. 2015 Oct;136 Suppl 1(S1):S10-40. [PMID: PMID:26430168]
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Bradshaw J, Shi D, Federico A, Klaiman C, Saulnier C. The Pull-to-Sit Task: Examining Infant Postural Development in Autism Spectrum Disorder. J Pediatr. 2022 Oct 3. [PMID: 36202237]
Begum Ali J, Charman T, Johnson MH, Jones EJH. Early Motor Differences in Infants at Elevated Likelihood of Autism Spectrum Disorder and/or Attention Deficit Hyperactivity Disorder. J Autism Dev Disord. 2020 Dec;50(12):4367-4384. [PMID: 32328858]
Carpenter KLH, Hahemi J, Campbell K, Lippmann SJ, Baker JP, Egger HL, Espinosa S, Vermeer S, Sapiro G, Dawson G. Digital Behavioral Phenotyping Detects Atypical Pattern of Facial Expression in Toddlers with Autism. Autism Res 2021 Mar;14(3):488-499. [PMID: 32924332]
Chang Z, Di Martino JM, Aiello R, Baker J, Carpenter K, Compton S, Davis N, Eichner B, Espinosa S, Flowers J, Franz L, Harris A, Howard J, Perochon S, Perrin EM, Krishnappa Babu PR, Spanos M, Sullivan C, Walter BK, Kollins SH, Dawson G, Sapiro G. Computational Methods to Measure Patterns of Gaze in Toddlers With Autism Spectrum Disorder. JAMA Pediatr. 2021 Aug 1;175(8):827-836. [PMID: 33900383]
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Megerian JT, Dey S, Melmed RD, Coury DL, Lerner M, Nicholls CJ, Sohl K, Rouhbakhsh R, Narasimhan A, Romain J, Golla S, Shareef S, Ostrovsky A, Shannon J, Kraft C, Liu-Mayo S, Abbas H, Gal-Szabo DE, Wall DP, Taraman S. Evaluation of an artificial intelligence- based medical device for diagnosis of autism spectrum disorder. NPJ Digit Med. 2022 May 5;5(1):57. [PMID: 35513550]
Grzadzinski R, Amso D, Landa R, Watson L, Guralnick M, Zwaigenbaum L, Deák G, Estes A, Brian J, Bath K, Elison J, Abbeduto L, Wolff J, Piven J. Pre-symptomatic intervention for autism spectrum disorder (ASD): defining a research agenda. J Neurodev Disord 2021 Oct 15;13(1):49. [PMID: 34654371]
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Berger NI, Wainer AL, Kuhn J, Bearss K, Attar S, Carter AS, Ibanez LV, Ingersoll BR, Neiderman H, Scott S, Stone WL. Characterizing Available Tools for Synchronous Virtual Assessment of Toddlers with Suspected Autism Spectrum Disorder: A Brief Report. J Autism Dev Disord. 2022 Jan;52(1):423-434. [PMID: 33606157]
Wagner L, Corona LL, Weitlauf AS, Marsh KL, Berman AF, Broderick NA, Francis S, Hine J, Nicholson A, Stone C, Warren Z. Use of the TELE-ASD-PEDS for Autism Evaluations in Response to COVID-19: Preliminary Outcomes and Clinician Acceptability. J Autism Dev Disord 2021 Sep;51(9):3063-3072. [PMID: 33125622]
Wagner L, Weitlauf AS, Hine J, Corona LL, Berman AF, Nicholson A, Allen W, Black M, Warren Z. Transitioning to Telemedicine During COVID-19: Impact on Perceptions and Use of Telemedicine Procedures for the Diagnosis of Autism in Toddlers. J Autism Dev Disord 2022 May;52(5):2247-2257. [PMID: 34085153]
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Chapter 2: Biology

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Liu J, Wang H, Sun W, Liu Y. Prioritizing Autism RiskGenes Using Personalized Graphical Models Estimated From Single-Cell RNA-seq Data. J Am Stat Assoc. 2022;117(537):38-51. [PMID: 35529781]
Qin Y, Cao L, Zhang J, Zhang H, Cai S, Guo B, Wu F, Zhao L, Li W, Ni L, Liu L, Wang X, Chen Y, Huang C. Whole-Transcriptome Analysis of Serum L1CAM-Captured Extracellular Vesicles Reveals Neural and Glycosylation Changes in Autism S pectrum Disorder. J Mol Neurosci. 2022 Jun;72(6): 1274-1292. [PMID: 35412111]
Marques AR, Santos JX, Martiniano H, Vilela J, Rasga C, Romão L, Vicente AM. Gene Variants Involved in Nonsense-Mediated mRNA Decay Suggest a Role in Autism Spectrum Disorder. Biomedicines. 2022 Mar 13;10(3):665. [PMID: 35327467]
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Okazaki K, Ota T, Makinodan M, Kishimoto N, Yamamuro K, Ishida R, Takahashi M, Yasuda Y, Hashimoto R, Iida J, Kishimoto T. Associations of childhood experiences with event-related potentials in adults with autism spectrum disorder. Sci Rep. 2020 Aug 10;10(1):13447. [PMID: 32778726]
Yoshikawa H, Kitamura S, Matsuoka K, Takahashi M, Ishida R, Kishimoto N, Yasuno F, Yasuda Y, Hashimoto R, Miyasaka T, Kichikawa K, Kishimoto T, Makinodan M. Adverse Childhood Experience Is Associated With Disrupted White Matter Integrity in Autism Spectrum Disorder: A Diffusion Tensor Imaging Study. Front Psychiatry. 2022 Jan 3;12:823260. [PMID: 35046859]
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Chapter 3: Genetic and Environmental Factors

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Chapter 4: Interventions

Whitehouse AJO, Varcin KJ, Pillar S, Billingham W, Alvares GA, Barbaro J, Bent CA, Blenkley D, Boutrus M, Chee A, Chetcuti L, Clark A, Davidson E, Dimov S, Dissanayake C, Doyle J, Grant M, Green CC, Harrap M, Iacono T, Matys L, Maybery M, Pope DF, Renton M, Rowbottam C, Sadka N, Segal L, Slonims V, Smith J, Taylor C, Wakeling S, Wan MW, Wray J, Cooper MN, Green J, Hudry K. Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism: A Randomized Clinical Trial of Outcomes to Diagnosis. JAMA Pediatr. 2021 Nov 1;175(11):e213298. [PMID: 34542577]
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Yu Q, Li E, Li L, Liang W. Efficacy of Interventions Based on Applied Behavior Analysis for Autism Spectrum Disorder: A Meta-Analysis. Psychiatry Investig. 2020 May;17(5):432-443. [PMID: 32375461]
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Crank JE, Sandbank M, Dunham K, Crowley S, Bottema-Beutel K, Feldman J, Woynaroski TG. Understanding the Effects of Naturalistic Developmental Behavioral Interventions: A Project AIM Meta-analysis. Autism Res. 2021 Apr;14(4): 817-834. [PMID: 33480474]
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Chapter 5: Services and Supports

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Chapter 6: Lifespan

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Interagency Autism Coordinating Committee (IACC). 2019-2020 IACC Autism Research Portfolio Analysis Report. In preparation.

Chapter 7: Infrastructure and Prevalence

Nichols L, Freund M, Ng C, Kau A, Parisi M, Taylor A, Armstrong D, Avenilla F, Joseph J, Meinecke D, Wagner A, Roger Little A. The National Institutes of Health Neurobiobank: a federated national network of human brain and tissue repositories. Biol Psychiatry. 2014 Jun 15;75(12):e21-2. [PMID: 24074636]
Johnson SB, Whitney G, McAuliffe M, Wang H, McCreedy E, Rozenblit L, Evans CC. Using global unique identifiers to link autism collections. J Am Med Inform Assoc. 2010 Nov-Dec;17(6):689-95. [PMID: 20962132]
Buxbaum JD, Daly MJ, Devlin B, Lehner T, Roeder K, State MW. The autism sequencing consortium: large-scale, high-throughput sequencing in autism spectrum disorders. Neuron. 2012 Dec 20;76(6): 1052-6. [PMID: 23259942]
Satterstrom FK, Kosmicki JA, Wang J, Breen MS, De Rubeis S, An JY, Peng M, Collins R, Grove J, Klei L, Stevens C, Reichert J, Mulhern MS, Artomov M, Gerges S, Sheppard B, Xu X, Bhaduri A, Norman U, Brand H, Schwartz G, Nguyen R, Guerrero EE, Dias C, Betancur C, Cook EH, Gallagher L, Gill M, Sutcliffe JS, Thurm A, Zwick ME, Børglum AD, State MW, Cicek AE, Talkowski ME, Cutler DJ, Devlin B, Sanders SJ, Roeder K, Daly MJ, Buxbaum JD. Large-Scale Exome Sequencing Study Implicates Both Developmental and Functional Changes in the Neurobiology of Autism. Cell. 2020 Feb 6;180(3):568-584.e23. [PMID: 31981491]
The National Science and Technology Council. Desirable Characteristics of Data Repositories for Federally Funded Research, 2022. DOI: 10.5479/10088/113528
Office of Autism Research Coordination (OARC), National Institute of Mental Health and Thomson Reuters, Inc. on behalf of the Interagency Autism Coordinating Committee (IACC). IACC/OARC Autism Spectrum Disorder Research Publications Analysis Report: The Global Landscape of Autism Research. July 2012. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/publications-analysis/july2012/index.shtml
Dietz PM, Rose CE, McArthur D, Maenner M. National and State Estimates of Adults with Autism Spectrum Disorder. J Autism Dev Disord.. 2020 Dec; 50(12):4258-4266. [PMID: 32390121]
Maenner MJ, Shaw KA, Bakian AV, Bilder DA, Durkin MS, Esler A, Furnier SM, Hallas L, Hall-Lande J, Hudson A, Hughes MM, Patrick M, Pierce K, Poynter JN, Salinas A, Shenouda J, Vehorn A, Warren Z, Constantino JN, DiRienzo M, Fitzgerald RT, Grzybowski A, Spivey MH, Pettygrove S, Zahorodny W, Ali A, Andrews JG, Baroud T, Gutierrez J, Hewitt A, Lee LC, Lopez M, Mancilla KC, McArthur D, Schwenk YD, Washington A, Williams S, Cogswell ME. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years -Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021 Dec 3;70(11):1-16. [PMID: 34855725]
Shaw KA, Maenner MJ, Baio J, Washington A, Christensen DL, Wiggins LD, Pettygrove S, Andrews JG, White T, Rosenberg CR, Constantino JN, Fitzgerald RT, Zahorodny W, Shenouda J, Daniels JL, Salinas A, Durkin MS, Dietz PM. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Early Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2016. MMWR Surveill Summ. 2020 Mar 27;69(3):1-11. [PMID: 32214075]
Maenner MJ, Graves SJ, Peacock G, Honein MA, Boyle CA, Dietz PM. Comparison of 2 Case Definitions for Ascertaining the Prevalence of Autism Spectrum Disorder Among 8-Year-Old Children. Am J Epidemiol. 2021 Oct 1;190(10):2198-2207. [PMID: 33847734]
Shaw KA, Williams S, Hughes MM, Warren Z, Bakian AV, Durkin MS, Esler A, Hall-Lande J, Salinas A, Vehorn A, Andrews JG, Baroud T, Bilder DA, Dimian A, Galindo M, Hudson A, Hallas L, Lopez M, Pokoski O, Pettygrove S, Rossow K, Shenouda J, Schwenk YD, Zahorodny W, Washington A, Maenner MJ. Statewide county-level autism spectrum disorder prevalence estimates-seven U.S. states, 2018. Ann Epidemiol. 2023 Mar;79:39-43. [PMID: 36669598]
Zablotsky B, Black LI, Blumberg SJ. Estimated Prevalence of Children With Diagnosed Developmental Disabilities in the United States, 2014-2016. NCHS Data Brief. 2017 Nov(291):1-8. [PMID: 29235982]

Cross-Cutting Topic: Sex and Gender

D'Mello AM, Frosch IR, Li CE, Cardinaux AL, Gabrieli JDE. Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline. Autism Res. 2022 Oct;15(10):1929-1940. [PMID: 36054081]
Maenner MJ, Shaw KA, Bakian AV, Bilder DA, Durkin MS, Esler A, Furnier SM, Hallas L, Hall-Lande J, Hudson A, Hughes MM, Patrick M, Pierce K, Poynter JN, Salinas A, Shenouda J, Vehorn A, Warren Z, Constantino JN, DiRienzo M, Fitzgerald RT, Grzybowski A, Spivey MH, Pettygrove S, Zahorodny W, Ali A, Andrews JG, Baroud T, Gutierrez J, Hewitt A, Lee LC, Lopez M, Mancilla KC, McArthur D, Schwenk YD, Washington A, Williams S, Cogswell ME. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years -Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021 Dec 3;70(11):1-16. [PMID: 34855725]
Loomes R, Hull L, Mandy WPL. What Is the Male- to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. J Am Acad Child Adolesc Psychiatry. 2017 Jun;56(6):466-474. [PMID: 28545751]
Burrows CA, Grzadzinski RL, Donovan K, Stallworthy IC, Rutsohn J, St John T, Marrus N, Parish-Morris J, MacIntyre L, Hampton J, Pandey J, Shen MD, Botteron KN, Estes AM, Dager SR, Hazlett HC, Pruett JR, Jr., Schultz RT, Zwaigenbaum L, Truong KN, Piven J, Elison JT. A Data-Driven Approach in an Unbiased Sample Reveals Equivalent Sex Ratio of Autism Spectrum Disorder-Associated Impairment in Early Childhood. Biol Psychiatry. 2022 Oct 15;92(8):654-662. [PMID: 35965107]
Blair BJ, Blanco S, Ikombo-Deguenon F, Belcastro A. Sex/Gender Phenotypes and the Diagnosis and Treatment of Autism Spectrum Disorder: Implications for Applied Behavior Analysts. Behav Anal Pract. 2020 Mar;13(1):263-269. [PMID: 32231989]
Palmer N, Beam A, Agniel D, Eran A, Manrai A, Spettell C, Steinberg G, Mandl K, Fox K, Nelson SF, Kohane I. Association of Sex With Recurrence of Autism Spectrum Disorder Among Siblings. JAMA Pediatr. 2017 Nov 1;171(11):1107-1112. [PMID: 28973142]
Wigdor EM, Weiner DJ, Grove J, Fu JM, Thompson WK, Carey CE, Baya N, van der Merwe C, Walters RK, Satterstrom FK, Palmer DS, Rosengren A, Bybjerg-Grauholm J, Hougaard DM, Mortensen PB, Daly MJ, Talkowski ME, Sanders SJ, Bishop SL, Børglum AD, Robinson EB. The female protective effect against autism spectrum disorder. Cell Genomics. 2022 June 8;2(6):100134 [PMID: 36778135]
Gockley J, Willsey AJ, Dong S, Dougherty JD, Constantino JN, Sanders SJ. The female protective effect in autism spectrum disorder is not mediated by a single genetic locus. Mol Autism. 2015;6:25. [PMID: 25973162]
Bai D, Marrus N, Yip BHK, Reichenberg A, Constantino JN, Sandin S. Inherited Risk for Autism Through Maternal and Paternal Lineage. Biol Psychiatry. 2020 Sep 15;88(6):480-487 [PMID: 32430199]
Enriquez KD, Gupta AR, Hoffman EJ. Signaling Pathways and Sex Differential Processes in Autism Spectrum Disorder. Front Psychiatry. 2021;12:716673. [PMID: 34690830]
Jack A, Sullivan CAW, Aylward E, Bookheimer SY, Dapretto M, Gaab N, Van Horn JD, Eilbott J, Jacokes Z, Torgerson CM, Bernier RA, Geschwind DH, McPartland JC, Nelson CA, Webb SJ, Pelphrey KA, Gupta AR. A neurogenetic analysis of female autism. Brain. 2021 Jul 28;144(6):1911-1926. [PMID: PMID:33860292]
Lawrence KE, Hernandez LM, Eilbott J, Jack A, Aylward E, Gaab N, Van Horn JD, Bernier RA, Geschwind DH, McPartland JC, Nelson CA, Webb SJ, Pelphrey KA, Bookheimer SY, Dapretto M. Neural responsivity to social rewards in autistic female youth. Transl Psychiatry. 2020 Jun 2;10(1):178. [PMID: 32488083]
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Dillon EF, Kanne S, Landa RJ, Annett R, Bernier R, Bradley C, Carpenter L, Kim SH, Parish-Morris J, Schultz R, Wodka EL. Sex Differences in Autism: Examining Intrinsic and Extrinsic Factors in Children and Adolescents Enrolled in a National ASD Cohort. J Autism Dev Disord. 2021 Dec 2. [PMID: 34859339]
Bourson L, Prevost C. Characteristics of restricted interests in girls with ASD compared to boys: a systematic review of the literature. Eur Child Adolesc Psychiatry. 2022 May 30. [PMID: 35644857]
Antezana L, Factor RS, Condy EE, Strege MV, Scarpa A, Richey JA. Gender differences in restricted and repetitive behaviors and interests in youth with autism. Autism Res. 2019 Feb;12(2):274-283. [PMID: 30561911]
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McQuaid GA, Lee NR, Wallace GL. Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity, and diagnostic timing. Autism. 2022 Feb;26(2):552-559. [PMID: 34420418]
Cook J, Hull L, Crane L, Mandy W. Camouflaging in autism: A systematic review. Clin Psychol Rev. 2021 Nov;89:102080. [PMID: 34563942]
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Harrop C, Libsack E, Bernier R, Dapretto M, Jack A, McPartland JC, Van Horn JD, Webb SJ, Pelphrey K. Do Biological Sex and Early Developmental Milestones Predict the Age of First Concerns and Eventual Diagnosis in Autism Spectrum Disorder? Autism Res.. 2021 Jan;14(1):156-168. [PMID: 33274604]
Green RM, Travers AM, Howe Y, McDougle CJ. Women and Autism Spectrum Disorder: Diagnosis and Implications for Treatment of Adolescents and Adults. Curr Psychiatry Rep. 2019 Mar 9;21(4):22. [PMID: 30852705]
Shattuck PT, Durkin M, Maenner M, Newschaffer C, Mandell DS, Wiggins L, Lee LC, Rice C, Giarelli E, Kirby R, Baio J, Pinto-Martin J, Cuniff C. Timing of identification among children with an autism spectrum disorder: findings from a population-based surveillance study. J Am Acad Child Adolesc Psychiatry. 2009 May; 48(5):474-483. [PMID: 19318992]
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. Disabil Health J. 2010 Apr;3(2):107-16. [PMID: 21122776]
Matheis M, Matson JL, Hong E, Cervantes PE. Gender Differences and Similarities: Autism Symptomatology and Developmental Functioning in Young Children. J Autism Dev Disord. 2019 Mar; 49(3):1219-1231. [PMID: 30443700]
Rudolph CES, Lundin A, Åhs JW, Dalman C, KosidouK. Brief Report: Sexual Orientation in Individuals with Autistic Traits: Population Based Study of 47,000 Adults in Stockholm County. J Autism Dev Disord. 2018 Feb;48(2):619-624. [PMID: 29086210]
George R, Stokes MA. Gender identity and sexual orientation in autism spectrum disorder. Autism. 2018 Nov;22(8):970-982. [PMID: 28914080]
van der Miesen AIR, Hurley H, Bal AM, de Vries ALC. Prevalence of the Wish to be of the Opposite Gender in Adolescents and Adults with Autism Spectrum Disorder. Arch Sex Behav. 2018 Nov;47(8):2307-2317. [PMID: 29736809]
Pecora LA, Hancock GI, Hooley M, Demmer DH, Attwood T, Mesibov GB, Stokes MA. Gender identity, sexual orientation and adverse sexual experiences in autistic females. Mol Autism. 2020 Jul 11;11(1):57. [PMID: 32653016]
Lewis LF, Ward C, Jarvis N, Cawley E. "Straight Sex is Complicated Enough!": The Lived Experiences of Autistics Who are Gay, Lesbian, Bisexual, Asexual, or Other Sexual Orientations. J Autism Dev Disord. 2021 Jul;51(7):2324-2337. [PMID: 32968942]
Hillier A, Gallop N, Mendes E, Tellez D, Buckingham A, Nizami A, OToole D. LGBTQ + and autism spectrum disorder: Experiences and challenges. Int J Transgend Health. 2020;21(1):98-110. [PMID: 33005905]
Croen LA, Zerbo O, Qian Y, Massolo ML, Rich S, Sidney S, Kripke C. The health status of adults on the autism spectrum. Autism. 2015 Oct;19(7):814-23. [PMID: 25911091]
Tint A, Weiss JA, Lunsky Y. Identifying the clinical needs and patterns of health service use of adoles- cent girls and women with autism spectrum disorder. Autism Res. 2017 Sep;10(9):1558-1566. [PMID: 28474493]
DaWalt LS, Taylor JL, Movaghar A, Hong J, Kim B, Brilliant M, Mailick MR. Health profiles of adults with autism spectrum disorder: Differences between women and men. Autism Res. 2021 Sep;14(9):1896- 1904. [PMID: 34213066]
Graham Holmes L, Ames JL, Massolo ML, Nunez DM, Croen LA. Improving the Sexual and Reproductive Health and Health Care of Autistic People. Pediatrics. 2022 Apr 1;149(Suppl 4). [PMID: 35363286]
Koffer Miller KH, Cooper DS, Song W, Shea LL. Self-reported service needs and barriers reported by autistic adults: Differences by gender identity. Research in Autism Spectrum Disorders. 2022 Apr 1; 92:101916. DOI:10.1016/j.rasd.2022.101916
Brown-Lavoie SM, Viecili MA, Weiss JA. Sexual knowledge and victimization in adults with autism spectrum disorders. J Autism Dev Disord. 2014 Sep;44(9):2185-96. [PMID: 24664634]

Cross-Cutting Topic: Promoting Equity and Reducing Disparities

Wiggins LD, Durkin M, Esler A, Lee LC, Zahorodny W, Rice C, Yeargin-Allsopp M, Dowling NF, Hall-Lande J, Morrier MJ, Christensen D, Shenouda J, Baio J. Disparities in Documented Diagnoses of Autism Spectrum Disorder Based on Demographic, Individual, and Service Factors. Autism Res. 2020 Mar;13(3):464-473. [PMID: 31868321]
Maenner MJ, Shaw KA, Bakian AV, Bilder DA, Durkin MS, Esler A, Furnier SM, Hallas L, Hall-Lande J, Hudson A, Hughes MM, Patrick M, Pierce K, Poynter JN, Salinas A, Shenouda J, Vehorn A, Warren Z, Constantino JN, DiRienzo M, Fitzgerald RT, Grzybowski A, Spivey MH, Pettygrove S, Zahorodny W, Ali A, Andrews JG, Baroud T, Gutierrez J, Hewitt A, Lee LC, Lopez M, Mancilla KC, McArthur D, Schwenk YD, Washington A, Williams S, Cogswell ME. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021 Dec;70(11):1-16. [PMID: 34855725]
Aylward BS, Gal-Szabo DE, Taraman S. Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder. J Dev Behav Pediatr.. 2021 Oct-Nov;42(8):682-689. [PMID: 34510108]
4. Constantino JN, Abbacchi AM, Saulnier C, Klaiman C, Mandell DS, Zhang Y, Hawks Z, Bates J, Klin A, Shattuck P, Molholm S, Fitzgerald R, Roux A, Lowe JK, Geschwind DH. Timing of the Diagnosis of Autism in African American Children. Pediatrics. 2020;146(3). [PMID: 32839243]
Zuckerman KE, Sinche B, Mejia A, Cobian M, Becker T, Nicolaidis C. Latino parents' perspectives on barriers to autism diagnosis. Acad Pediatr. 2014 May-Jun;14(3):301-8. [PMID: 24767783]
Bishop-Fitzpatrick L, Kind AJH. A Scoping Review of Health Disparities in Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 2017 Nov;47(11):3380-3391. [PMID: 28756549]
Kauh TJ, Read JG, Scheitler AJ. The Critical Role of Racial/Ethnic Data Disaggregation for Health Equity. Popul Res Policy Rev. 2021;40(1):1-7. [PMID: 33437108]
Gigli KH. Data Disaggregation: A Research Tool to Identify Health Inequities. J Pediatr Health Care. 2021 May-Jun;35(3):332-336. [PMID: 33775498]
Shefcyk A. Count us in: addressing gender disparities in autism research. Autism. 2015 Feb;19(2):131-2. [PMID: 25789398]
Steinbrenner JR, McIntyre N, Rentschler LF, Pearson JN, Luelmo P, Jaramillo ME, Boyd BA, Wong C, Nowell SW, Odom SL, Hume KA. Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices. Autism. 2022 Nov;26(8):2026-2040. [PMID: 35068190]
Durkin MS, Maenner MJ, Baio J, Christensen D, Daniels J, Fitzgerald R, Imm P, Lee L-C, Schieve LA, Braun KVN, Wingate MS, Yeargin-Allsopp M. Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities. American Journal of Public Health.. 2017;107(11):1818- 1826. [PMID: 28933930]
Antezana L, Scarpa A, Valdespino A, Albright J, Richey JA. Rural Trends in Diagnosis and Services for Autism Spectrum Disorder. Front Psychol. 2017;8:590. [PMID: 28473784]
Piven J, Rabins P. Autism spectrum disorders in older adults: toward defining a research agenda. J Am Geriatr Soc. 2011 Nov;59(11):2151-5. [PMID: 22091837]
Lekas HM, Pahl K, Fuller Lewis C. Rethinking Cultural Competence: Shifting to Cultural Humility. Health Serv Insights. 2020;13:1178632920970580. [PMID: 33424230]
Mathur SK, Rodriguez KA. Cultural Responsiveness Curriculum for Behavior Analysts: A Meaningful Step Toward Social Justice.Behav Anal Pract. 2021 Jun 22;15(4):1023-1031. [PMID: 36605153]
Hopf SC, Crowe K, Verdon S, Blake HL, McLeod S. Advancing Workplace Diversity Through the Culturally Responsive Teamwork Framework. Am J Speech Lang Patho. 2021 Sep 23;30(5):1949-1961. [PMID: 34314257]
Singh JS, Bunyak G. Autism Disparities: A Systematic Review and Meta-Ethnography of Qualitative Research. Qual Health Res. 2019 May;29(6):796-808. [PMID: 30474491]
Trent M, Dooley DG, Dougé J. The Impact of Racism on Child and Adolescent Health. Pediatrics. 2019 Aug;144(2). [PMID: 31358665]
Bridgemohan C, Bauer NS, Nielsen BA, DeBattista A, Ruch-Ross HS, Paul LB, Roizen N. A Workforce Survey on Developmental-Behavioral Pediatrics. Pediatrics. 2018;141(3):e20172164. [PMID: 29453235]
DuBay M, Watson LR, Zhang W. In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. J Autism Dev Disord. 2018 May;48(5):1623-1639. [PMID: 29188586]
Burkett K, Kamimura-Nishimura KI, Suarez-Cano G, Ferreira-Corso L, Jacquez F, Vaughn LM. Latino-to- Latino: Promotores' Beliefs on Engaging Latino Participants in Autism Research. J Racial Ethn Health Disparities. 2021 Jun. [PMID: 34156630]

Covid-19 and The Autism Community: Impact and Lessons Learned

Koyama AK, Koumans EH, Sircar K, Lavery A, Hsu J, Ryerson AB, Siegel DA. Severe Outcomes, Readmission, and Length of Stay Among COVID-19 Patients with Intellectual and Developmental Disabilities. Int J Infect Dis.. 2022 Mar;116:328-330. [PMID: 35077878]
Friedman C. The COVID-19 pandemic and quality of life outcomes of people with intellectual and developmental disabilities. Disabil Health J. 2021 Oct;14(4):101117. [PMID: 34144897]
Liu N, Tan J-S, Liu L, Wang Y, Hua L, Qian Q. Genetic Predisposition Between COVID-19 and Four Mental Illnesses: A Bidirectional, Two-Sample Mendelian Randomization Study. 2021 Oct 20; 12:746276.. Front Psychiatry. [PMID: 34744839]
Li T, Zhang L, Cai S, Lu Z, Bao W, Rong S. Association of mental health with clinical outcomes in hospitalized patients with moderate COVID-19. J Affect Disord. 2022 Sep 1;312:331-336. [PMID: 35577158]
Landes SD, Turk MA, Damiani MR, Proctor P, Baier S. Risk Factors Associated With COVID-19 Outcomes Among People With Intellectual and Developmental Disabilities Receiving Residential Services. JAMA Netw Open. 2021 Jun 1;4(6):e2112862. [PMID: 34100935]
Schott W, Tao S, Shea L. COVID-19 risk: Adult Medicaid beneficiaries with autism, intellectual disability, and mental health conditions. Autism. 2021 May;26(4):975-987. [PMID: 34420427]
Rosen TE, Mazefsky CA, Vasa RA, Lerner MD. Co-occurring psychiatric conditions in autism spectrum disorder. Int Rev Psychiatry. 2018 Feb;30(1):40-61. [PMID: 29683351]
Tye C, Runicles AK, Whitehouse AJO, Alvares GA. Characterizing the Interplay Between Autism Spectrum Disorder and Comorbid Medical Conditions: An Integrative Review. Front Psychiatry. 2019 Jan 23;9:751 [PMID: 30733689]
Krieger I, Erez G, Weinstein O, Cohen AD, Tzur Bitan D. COVID-19 Morbidity Among Individuals with Autistic Spectrum Disorder: A Matched Controlled Population-Based Study. 2021 Jul 8;53(2):789-794. J Autism Dev Disord [PMID: 34240292]
Karpur A, Vasudevan V, Shih A, Frazier T. Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database. J Autism Dev Disord. 2022 May;52(5):2350-2356. [PMID: 34041682]
Sneller MC, Liang CJ, Marques AR, Chung JY, Shanbhag SM, Fontana JR, Raza H, Okeke O, Dewar RL, Higgins BP, Tolstenko K, Kwan RW, Gittens KR, Seamon CA, McCormack G, Shaw JS, Okpali GM, Law M, Trihemasava K, Kennedy BD, Shi V, Justement JS, Buckner CM, Blazkova J, Moir S, Chun TW, Lane HC. A Longitudinal Study of COVID-19 Sequelae and Immunity: Baseline Findings. Ann Intern Med. 2022 Jul;175(7):969-979. [PMID: 35605238]
Paraschivescu C, Barbosa S, Lorivel T, Glaichenhaus N, Davidovic L. Cytokine changes associated with the maternal immune activation (MIA) model of autism: A penalized regression approach. PLoS One. 2020 Aug 6;15(8):e0231609. [PMID: 32760152]
Brown AS. Epidemiologic studies of exposure to prenatal infection and risk of schizophrenia and autism. Dev Neurobiol. 2012 Oct;72(10):1272-1276. [PMID: 22488761]
Elgueta D, Murgas P, Riquelme E, Yang G, Cancino GI. Consequences of Viral Infection and Cytokine Production During Pregnancy on Brain Development in Offspring. Front Immunol. 2022 Apr 7;13:816619. [PMID: 35464419]
Vila-Candel R, González-Chordá VM, Soriano-Vidal FJ, Castro-Sánchez E, Rodríguez-Blanco N, Gómez- Seguí A, Andreu-Pejó L, Martínez-Porcar C, Rodríguez Gonzálvez C, Torrent-Ramos P, Asensio-Tomás N, Herraiz-Soler Y, Escuriet R, Mena-Tudela D. Obstetric– Neonatal Care during Birth and Postpartum in Symptomatic and Asymptomatic Women Infected with SARS-CoV-2: A Retrospective Multicenter Study. Int J Environ Res Public Health. 2022 Apr 30; 19(9):5482. [PMID: 35564880]
Michailidou D, Stavridou A, Panagouli ED, Sergentanis TN, Psaltopoulou T, Bacopoulou F, Baltag V, Greydanus DE, Mastorakos G, Chrousos G, Tsolia MN, Tsitsika AK, Vlahos N. The impact of COVID-19 during pregnancy on maternal and neonatal outcomes: a systematic review. EMBnet J. 2021 Oct;26:e969. [PMID: 35600318]
Edlow AG, Castro VM, Shook LL, Kaimal AJ, Perlis RH. Neurodevelopmental Outcomes at 1 Year in Infants of Mothers Who Tested Positive for SARS- CoV-2 During Pregnancy. JAMA Netw Open. 2022 Jun 1;5(6):e2215787 [PMID: 35679048]
Lund EM, Ayers KB. Ever-changing but always constant: "Waves" of disability discrimination during the COVID-19 pandemic in the United States. Disabil Health J. 2022 Sep 2;101374 [PMID: 36156274]
Cleveland Manchanda EC, Sanky C, Appel JM. Crisis Standards of Care in the USA: A Systematic Review and Implications for Equity Amidst COVID-19. J Racial Ethn Health Disparities. 2021 Aug;8(4):824-836. [PMID: 32789816]
Aquino YSJ, Rogers WA, Scully JL, Magrabi F, Carter SM. Ethical Guidance for Hard Decisions: A Critical Review of Early International COVID-19 ICU Triage Guidelines. Health Care Anal. 2022 Jun;30(2):163-195. [PMID: 34704198]
Dowling A, Lane H, Haines T. Community preferences for the allocation of scarce healthcare resources during the COVID-19 pandemic: a review of the literature. Public Health. 2022 Aug;209:75-81. [PMID: 35849934]
Shea LL, Becker A, Lee BK, Miller KK, Cooper D, Anderson K, Salzer MS, Vanness DJ. Self-reported COVID-19 vaccination acceptance and hesitancy among autistic adults. Vaccine. 2022 May 26;40(24):3288-3293. [PMID: 35484038]
Asghar N, Mumtaz H, Syed AA, Eqbal F, Maharjan R, Bamboria A, Shrehta M. Safety, efficacy, and immunogenicity of COVID-19 vaccines; a systematic review. Immunol Med. 2022 Dec;45(4):225-237. [PMID: 35491898]
Pullan S, Dey M. Vaccine hesitancy and anti- vaccination in the time of COVID-19: A Google Trends analysis. Vaccine. 2021 Apr 1;39(14): 1877-1881. [PMID: 33715904]
Choi K, Becerra-Culqui T, Bhakta B, Bruxvoort K, Coleman KJ. Parent intentions to vaccinate children with autism spectrum disorder against COVID-19. J Pediatr Nurs. 2022 Mar-Apr;63:108-110. [PMID: 34836713]
Andrejko KL, Pry JM, Myers JF, Fukui N, Deguzman JL, Openshaw J, Watt JP, Lewnard JA, Jain S, Abdulrahim Y, Barbaduomo CM, Bermejo MI, Cheunkarndee J, Cornejo AF, Corredor S, Dabbagh N, Dong ZN, Dyke A, Fang AT, Felipe D, Frost PM, Ho T, Javadi MH, Kaur A, Lam A, Li SS, Miller M, Ni J, Park H, Poindexter DJ, Samani H, Saretha S, Spencer M, Spinosa MM, Tran VH, Walas N, Wan C, Xavier E. Effectiveness of Face Mask or Respirator Use in Indoor Public Settings for Prevention of SARS-CoV-2 Infection — California, February–December 2021. MMWR Morb Mortal Wkly Rep. 2022 Feb 11;71(6):212-216. [PMID: 35143470]
Pazhoohi F, Forby L, Kingstone A. Facial masks affect emotion recognition in the general population and individuals with autistic traits. PLoS One. 2021 Sep 30;16(9):e0257740. [PMID: 34591895]
Halbur M, Kodak T, McKee M, Carroll R, Preas E, Reidy J, Cordeiro MC. Tolerance of face coverings for children with autism spectrum disorder. J Appl Behav Anal. 2021 Apr;54(2):600-617. [PMID: 33772777]
Sivaraman M, Virues-Ortega J, Roeyers H. Telehealth mask wearing training for children with autism during the COVID-19 pandemic. J Appl Behav Anal. 2021 Jan;54(1):70-86. [PMID: 33241588]
Lillie MA, Harman MJ, Hurd M, Smalley MR. Increasing passive compliance to wearing a facemask in children with autism spectrum disorder. J Appl Behav Anal. 2021 Apr;54(2):582-599. [PMID: 33740281]
Ertel HM, Wilder DA, Hodges AC. Evaluation of a Graduated Exposure Procedure to Teach Extended Mask Wearing in Various Settings to Children With Autism. Behav Modif. 2022 Sep;46(5):1218-1235. [PMID: 34612710]
White LC, Law JK, Daniels AM, Toroney J, Vernoia B, Xiao S, Feliciano P, Chung WK. Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort. J Autism Dev Disord. 2021 Oct;51(10):3766-3773. [PMID: 33387233]
Wanjagua R, Hepburn SJ, Faragher R, John ST, Gayathri K, Gitonga M, Meshy CF, Miranda L, Sindano D. Key learnings from COVID-19 to sustain quality of life for families of individuals with IDD. J Policy Pract Intellect Disabil. 2022 Mar;19(1):72-85. [PMID: 35601013]
Jeste S, Hyde C, Distefano C, Halladay A, Ray S, Porath M, Wilson RB, Thurm A. Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions.J Intellect Disabil Res. 2020 Sep 17;64(11):825-833. [PMID: 32939917]
Stadheim J, Johns A, Mitchell M, Smith CJ, Braden BB, Matthews NL. A qualitative examination of the impact of the COVID-19 pandemic on children and adolescents with autism and their parents. Res Dev Disabil. 2022 Jun;125:104232. [PMID: 35447501]
Charalampopoulou M, Choi EJ, Korczak DJ, Cost KT, Crosbie J, Birken CS, Charach A, Monga S, Kelley E, Nicolson R, Georgiades S, Ayub M, Schachar RJ, Iaboni A, Anagnostou E. Mental health profiles of autistic children and youth during the COVID-19 pandemic. Paediatr Child Health. 2022 May 5;27 (Suppl 1):S59-S65. [PMID: 35615409]
Nicholas DB, Zulla RT, Conlon O, Dimitropoulos G, Urschel S, Rapoport A, Katz SL, Bruce A, West LJ, Belletrutti M, Cullen E, Zwaigenbaum L. Mental health impacts of the COVID-19 pandemic on children with underlying health and disability issues, and their families and health care providers. Paediatr Child Health. 2022 May 9;27(Suppl 1):S33-S39. [PMID: 35620553]
Bal VH, Wilkinson E, White LC, Law JK, Feliciano P, Chung WK. Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress. Autism Res. 2021 Jun;14(6):1209-1219. [PMID: 33559334]
Karpur A, Vasudevan V, Frazier TW, Shih AJ. Food insecurity in households of children with ASD in COVID-19 pandemic: A comparative analysis with the Household Pulse Survey data using stabilized inverse probability treatment weights. Disabil Health J. 2022 Jul;15(3):101323. [PMID: 35459604]
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Spain D, Stewart GR, Mason D, Robinson J, Capp SJ, Gillan N, Ensum I, Happé F. Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals. Front Psychiatry. 2022 Apr 28;13:789449. [PMID: 35573336]
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About the IACC

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating Federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human Services (HHS) on issues related to autism. The Committee was established by Congress under the Children's Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019.

Membership of the Committee includes a wide array of federal agencies involved in autism research and services, as well as public stakeholders, including autistic adults, family members of those on the autism spectrum, advocates, service providers, and researchers, who represent a variety of perspectives. The IACC membership is composed to ensure that the Committee is equipped to address the broad range of issues and challenges faced by individuals and families in the autism community.

Under the CAA and subsequent authorizations, the IACC is required to (1) develop and annually update a strategic plan for autism research, (2) develop and annually update a summary of advances in autism research, and (3) monitor federal activities related to autism.

Through these and other activities, the IACC provides guidance to HHS and partners with other federal departments, research and advocacy organizations, and the broader autism community to accelerate research and enhance services with the goal of positively impacting the lives of people on the autism spectrum and their families.

For more information about the IACC, see https://iacc.hhs.gov.

Editorial Note on References to Autism

The IACC supports the use of accessible language around autism in its publications. The terms "person with autism," "person with ASD," "autistic person," and "person on the autism spectrum" are used interchangeably throughout this document. Some members of the autism community prefer one term, while others prefer another. The Committee respects the different opinions within the community on the use of this language and does not intend to endorse any particular preference. In addition, the term "autism" is generally used in this document, and "autism spectrum disorder (ASD)" is used when referring specifically to the DSM-5-TR defined diagnosis.

Interagency Autism Coordinating Committee Member Roster

Chair

Joshua Gordon, M.D., Ph.D. Director National Institute of Mental Health National Institutes of Health Rockville, MD

Federal Members

Skye Bass, L.C.S.W. Program Coordinator TeleBehavioral Health Center of Excellence Division of Behavioral Health Indian Health Service Rockville, MD
Diana W. Bianchi, M.D. Director Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Anita Everett, M.D., D.F.A.P.A. Director Center for Mental Health Services Substance Abuse and Mental Health Services Administration Rockville, MD
Tiffany R. Farchione, M.D. Director Division of Psychiatry Center for Drug Evaluation and Research U.S. Food and Drug Administration Silver Spring, MD
Maria Fryer, M.S. Program Analyst Bureau of Justice Assistance U.S. Department of Justice Washington, DC
Dayana J. Garcia, M.Ed. Disabilities and Inclusion Specialist Office of Head Start Administration for Children and Families Washington, DC
Elaine Cohen Hubal, Ph.D. Senior Science Advisor Center for Public Health and Environmental Assessment U.S. Environmental Protection Agency Research Triangle Park, NC
Jennifer Johnson, Ed.D. Deputy Commissioner Administration on Disabilities Administration for Community Living Washington, DC
Walter J. Koroshetz, M.D. Director National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
Leah Lozier, Ph.D. Social Science Analyst Office of Policy Development and Research U.S. Department of Housing and Urban Development Washington, DC
Alison R. Marvin, Ph.D. Statistician/Health Sciences Researcher Division of the Analytics Center of Excellence Social Security Administration Woodlawn, MD
Matthew Miller, Ph.D., M.P.H. Director VA Suicide Prevention Program Office of Mental Health and Suicide Prevention Veterans Health Administration U.S. Department of Veterans Affairs Washington, DC
Kamila Mistry, Ph.D., M.P.H. Health Scientist Administrator Associate Director Office of Extramural Research, Education, and Priority Populations Senior Advisor Value Based Care Transformation Child Health and Quality Improvement Agency for Healthcare Research and Quality Rockville, MD
Lauren Raskin Ramos, M.P.H. Director Division of Maternal and Child Health Workforce Development Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
Karyl Rattay, M.D., M.S., FAAP Director Division of Human Development and Disability National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
Jodie Sumeracki, B.A. Senior Policy Advisor Disabled and Elderly Health Programs Group Centers for Medicare and Medicaid Services Baltimore, MD
Lawrence A. Tabak, D.D.S, Ph.D. Performing the Duties of the Director National Institutes of Health Bethesda, MD
Debara L. Tucci, M.D., M.S., M.B.A., F.A.C.S. Director National Institute on Deafness and Other Communication Disorders National Institutes of Health Bethesda, MD
Larry Wexler, Ed.D. Director Research to Practice Division Office of Special Education Programs U.S. Department of Education Washington, DC
Nicole Williams, Ph.D. Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD
Taryn Mackenzie Williams, M.A. Assistant Secretary Office of Disability Employment Policy U.S. Department of Labor Washington, DC
Richard Woychik, Ph.D. Director National Institute of Environmental Health Sciences Director National Toxicology Program National Institutes of Health Research Triangle Park, NC

Public Members

Maria Mercedes Avila, Ph.D., M.S.W., M.Ed. Associate Professor Department of Pediatrics Director Vermont LEND Program Larner College of Medicine University of Vermont Burlington, VT
Alice Carter, Ph.D. Professor Department of Psychology University of Massachusetts Boston Boston, MA
Sam Crane, J.D. Legal Director Quality Trust for Individuals with Disabilities Washington, DC
Aisha Dickerson, Ph.D. Assistant Professor Department of Epidemiology Bloomberg School of Public Health Johns Hopkins University Baltimore, MD
Dena Gassner, M.S.W. Ph.D. Candidate in Social Work Adelphi University West Hempstead, NY Adjunct Professor Department of Health Sciences Towson University Towson, MD
Morénike Giwa Onaiwu, Ph.D. Equity, Justice, and Representation Executive Committee Chair Autistic Women & Nonbinary Network Humanities Scholar Center for the Study of Women, Gender, and Sexuality Rice University Houston, TX
Alycia Halladay, Ph.D. Chief Science Officer Autism Science Foundation New York, NY Adjunct Faculty Department of Pharmacology and Toxicology Rutgers University Piscataway, NJ
Craig Johnson, M.Ed. Founder and President Champions Foundation Houston, TX
Yetta Myrick, B.A. Founder and President DC Autism Parents Washington, DC
Lindsey Nebeker, B.A. Marketing Consultant Independent Contractor Alexandria, VA
Valerie Paradiz, Ph.D. Vice President Services and Supports Autism Speaks Princeton, NJ
Jenny Mai Phan, Ph.D. Research Post-Doctoral Fellow Center for Autism Spectrum Disorders Children's National Hospital Washington, DC
Joseph Piven, M.D. Thomas E. Castelloe Distinguished Professor of Psychiatry and Pediatrics Director University Center of Excellence in Developmental Disabilities (UCEDD) University of North Carolina-Chapel Hill Chapel Hill, NC
JaLynn R. Prince, B.F.A. Co-Founder, President, and Chair Madison House Autism Foundation Rockville, MD
Susan Rivera, Ph.D. Professor Department of Psychology Dean College of Behavioral & Social Sciences University of Maryland College Park, MD
Matthew Siegel, M.D. Associate Professor of Psychiatry and Pediatrics Tufts University School of Medicine Boston, MA Vice President of Medical Affairs Developmental Disorders Service Line Maine Behavioral Healthcare Westbrook, ME
Ivanova Smith, B.A. Self-Advocate Faculty Leadership Education in Neurodevelopmental and Related Disabilities University of Washington Tacoma, WA
Hari Srinivasan Ph.D. Neuroscience Student and PD Soros Fellow Vanderbilt University Nashville, Tennessee
Helen Tager-Flusberg, Ph.D. Professor Department of Psychological and Brain Sciences Director Center for Autism Research Excellence Boston University Boston, MA
Julie Lounds Taylor, Ph.D. Associate Professor Department of Pediatrics Investigator Vanderbilt Kennedy Center Vanderbilt University Medical Center Nashville, TN
Paul Wang, M.D. Deputy Director Clinical Research Associates, LLC Simons Foundation New York, NY Associate Clinical Professor of Pediatrics Yale University School of Medicine New Haven, CT
Stephen Whitlow, J.D. Executive Director Transition Services Merakey Baton Rouge, LA

IACC Alternates

Courtney Ferrell Aklin, Ph.D (for Lawrence A. Tabak, D.D.S, Ph.D.) Acting Associate Deputy Director National Institutes of Health Bethesda, MD
Thyria Alvarez, M.S.W. (for Leah Lozier, Ph.D) Social Science Analyst Office of Policy Development and Research U.S. Department of Housing and Urban Development Washington, DC
Mitchell Berger, M.P.H. (for Anita Everett, M.D., D.F.A.P.A) Public Health Advisor Center for Mental Health Services Substance Abuse and Mental Health Services Administration Rockville, MD
Leola Brooks, M.S. (for Alison R. Marvin, Ph.D) Social Insurance Specialist Social Security Administration Woodlawn, MD
Amanda B. Bryans, M.S. (for Dayana Garcia, M.Ed) Education and Research to Practice Supervisor Office of Head Start Administration for Children and Families Washington, DC
Judith A. Cooper, Ph.D. (for Debara L. Tucci, M.D., M.S., M.B.A., F.A.C.S) Deputy Director National Institute on Deafness and Other Communication Disorders National Institutes of Health Bethesda, MD
Rebecca Dzubow, M.E.M., M.P.H. (for Elaine Cohen Hubal, Ph.D) Regulatory Support and Science Policy Division Director Office of Children’s Health Protection U.S. Environmental Protection Agency Washington, DC
Kristina Hardy, Ph.D., M.D. (for Walter J. Koroshetz, M.D) Program Director Division of Clinical Research National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
Melissa L. Harris, B.S. (for Jodie Sumeracki, B.A) Deputy Director Disabled and Elderly Health Programs Group Center for Medicaid and CHIP Services Centers for Medicare and Medicaid Services Baltimore, MD
Alice Kau, Ph.D. (for Diana W. Bianchi, M.D) Health Scientist Administrator Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
Christy Kavulic, Ed.D. (for Larry Wexler, Ed.D) Associate Division Director Office of Special Education Programs U.S. Department of Education Washington, DC
Cindy Lawler, Ph.D. (for Richard Woychik, Ph.D) Chief Genes, Environment, and Health Branch National Institute of Environmental Health Sciences National Institutes of Health Research Triangle Park, NC
Justin Mills, M.D., M.P.H., F.A.A.P. (for Kamila Mistry, Ph.D., M.P.H) Medical Officer U.S. Preventive Services Task Force Program Center for Evidence and Practice Improvement Agency for Healthcare Research and Quality Rockville, MD
Scott Patterson, Ph.D., HSPP (for Matthew Miller, Ph.D., M.P.H.) Clinical Psychologist Richard L. Roudebush Veterans Affairs Medical Center Veterans Health Administration U.S. Department of Veterans Affairs Indianapolis, IN
Amanda Reichard, Ph.D. (for Jennifer Johnson, Ed.D) Project Officer National Institute on Disability, Independent Living, and Rehabilitation Research Administration for Community Living Washington, DC
Scott Michael Robertson, Ph.D. (for Taryn Mackenzie Williams, M.A) Senior Policy Advisor Office of Disability Employment Policy U.S. Department of Labor Washington, DC
Robyn Schulhof, M.A. (for Lauren Raskin Ramos, M.P.H) Senior Public Health Analyst Leadership Education in Neurodevelopmental and Related Disabilities Associate of University Centers on Disabilities Cooperative Agreement Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
Stuart Shapira, M.D., Ph.D. (for Karyl Rattay, M.D., M.S., FAAP) Chief Medical Officer Associate Director for Science National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
Cornelia Sigworth, M.S. (for Maria Fryer, M.S) Supervisory Program Manager Bureau of Justice Assistance U.S. Department of Justice Washington, DC
Martine Solages, M.D. (for Tiffany R. Farchione, M.D) Medical Officer Division of Psychiatry Center for Drug Evaluation and Research U.S. Food and Drug Administration Silver Spring, MD
Anna E. Tschiffely, Ph.D. (for Nicole Williams, Ph.D) Science Officer Neurofibromatosis, Multiple Sclerosis, and Autism Research Programs Congressionally Directed Medical Research Programs U.S. Army Medical Research and Development Command U.S. Department of Defense Frederick, MD

Office of National Autism Coordination Staff

6001 Executive Boulevard, Bethesda, MD 20892
National Institute of Mental Health
National Institutes of Health
Email: IACCPublicInquiries@mail.nih.gov
Website: https://iacc.hhs.gov

Susan Daniels, Ph.D. National Autism Coordinator U.S. Department of Health and Human Services Director Office of National Autism Coordination National Institute of Mental Health Executive Secretary, IACC

Oni Celestin, Ph.D.* Health Science Policy Analyst
Katrina Ferrara, Ph.D.* Health Science Policy Analyst
Steven Isaacson, L.M.S.W. Autism Policy Analyst
Tianlu Ma, Ph.D.* Health Science Policy Analyst
Rebecca Martin, M.P.H.* Public Health Analyst
Angelice Mitrakas, B.A.* Management Analyst
Luis Valdez-Lopez, M.P.H. Health Science Policy Analyst
Jeffrey Wiegand, B.S.* Web Development and Digital Outreach Manager

*Also a staff member of the Office of Autism Research Coordination (OARC), within the Office of National Autism Coordination (ONAC)

Cover Design

Medical Arts Branch, Office of Research Services, National Institutes of Health

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

Interagency Autism Coordinating Committee (IACC). 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy. September 2023. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/strategic-plan/2023/.

Conclusion

Appendices