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Psychiatric and Medical Profiles of Autistic Adults in the SPARK Cohort

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Abstract

This study examined lifetime medical and psychiatric morbidity reported by caregivers of 2917 autistic adults participating in the US research cohort SPARK. Participants were 78.4% male, 47.3% had intellectual disability, and 32.1% had persistent language impairments. Childhood language disorders (59.7%), speech/articulation problems (32.8%), sleep (39.4%) and eating problems (29.4%), motor delays (22.8%) and history of seizure (15.5%) were the most frequently reported clinical features. Over two thirds (67.2%) had been diagnosed with at least one psychiatric disorder (anxiety disorders: 41.1%; ADHD: 38.7%). Compared to verbally fluent participants, those with language impairments had lower frequencies of almost all psychiatric disorders. Female sex and older age were associated with higher medical and psychiatric morbidity.

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Acknowledgments

The authors express their thanks to the SPARK team at the Simons Foundation, and to the OHSU SPARK team colleagues. We are grateful to Tunisia Greene and Elizabeth Brooks from the Simons Foundation who have helped prepare this manuscript. The SPARK cohort was built by the joint effort of 31 academic teams whose contribution to recruiting the sample used in this study was essential. The authors wish to express their special thanks to participants with ASD and their relatives whose engagement with and confidence in the research community is a condition for the success of SPARK. It is our hope that, in turn, through this and future communications, knowledge will accrue and research will expand on autistic adults in order to facilitate the development and implementation of improved services and policies. We appreciate obtaining access to phenotypic data on SFARI Base. Approved researchers can obtain the SPARK dataset described in this study by applying at https://base.sfari.org.

The members of the SPARK Consortium are:

Leonard Abbeduto, Gabriella Aberbach, John Acampado, Andrea J. Ace, Charles Albright, Michael Alessandri, David G. Amaral, Alpha Amatya, Claudine Anglo, Robert D. Annett, Ivette Arriaga, Raven Ashley, Irina Astrovskaya, Kelly Baalman, Melissa Baer, Ethan Bahl, Adithya Balasubramanian, Gabrielle Baraghoshi, Nicole Bardett, Rebecca A. Barnard, Asif Bashar, Arthur Beaudet, Malia Beckwith, Landon Beeson, Dawn Bentley, Raphael A. Bernier, Elizabeth Berry-Kravis, Sarah Boland, Stephanie Booker, Catherine Bradley, Stephanie J. Brewster, Elizabeth Brooks, Melissa Brown, Leo Brueggeman, Martin E. Butler, Eric M. Butter, Kristen Callahan, Alexies Camba, Paul Carbone, Laura Carpenter, Sarah Carpenter, Nicholas Carriero, Lindsey A. Cartner, Lucas Casten, Ahmad S. Chatha, Wubin Chin, Sharmista Chintalapalli, Daniel Cho, Wendy K. Chung, Renee D. Clark, Cheryl Cohen, Kendra Coleman, Costanza Columbi, Leigh Coppola, Eric Courchesne, Joseph F. Cubells, Mary Hannah Currin, Amy M. Daniels, Giancarla David, Lindsey DeMarco, Megan Y. Dennis, Kate Dent, Gabriel S. Dichter, Yan Ding, Huyen Dinh, Ryan Doan, HarshaVardhan Doddapaneni, Evan E. Eichler, Sara Eldred, Christine Eng, Craig A. Erickson, Amy Esler, Ali Fatemi, Pamela Feliciano, Gregory Fischer, Angela Fish, Ian Fisk, Eric J. Fombonne, Margaret Foster, Emily A. Fox, Sunday Francis, Sandra L. Friedman, Swami Ganesan, Michael Garrett, Vahid Gazestani, Madeleine R. Geisheker, Jennifer A. Gerdts, Daniel H. Geschwind, Mohammad Ghaziuddin, Richard A. Gibbs, Robin P. Goin-Kochel, Natalia Gonzalez, Lindsey Goudreau, Anthony J. Griswold, Luke P. Grosvenor, Angela J. Gruber, Amanda C. Gulsrud, Jaclyn Gunderson, Chris Gunter, Abha Gupta, Anibal Gutierrez, Melissa N. Hale, Monica Haley, Jacob B. Hall, Kira E. Hamer, Bing Han, Nathan Hanna, Antonio Hardan, Christina Harkins, Gloria Harrington, Jill Harris, Nina Harris, Brenda Hauf, Caitlin Hayes, Kathryn Heerwagen, Susan L. Hepburn, Lynette M. Herbert, Michelle Heyman, Lorrin Higgins, Brittani A. Hilscher, Eugenia Hofammann, Margaret Hojlo, Susannah Horner, Alexander Hsieh, Jianhong Hu, Lark Y. Huang-Storms, Samantha Hunter, Hanna Hutter, Dalia Istephanous, Suma Jacob, Nancy Jaramillo, Anna Jelinek, William Jensen, Mark Jones, Michelle Jordy, Alissa Jorgenson, Roger Jou, A. Pablo Juarez, Jessyca Judge, Jane Jurayj, Taylor Kalmus, Stephen Kanne, Hannah E. Kaplan, Lauren Kasparson, Matt Kent, So Hyun Kim, Alex Kitaygorodsky, Hope Koene, Tanner Koomar, Viktoriya Korchina, Anthony D. Krentz, Hoa Lam Schneider, Elena Lamarche, Erica Lampert, Rebecca J. Landa, Alex E. Lash, J. Kiely Law, Noah Lawson, Kevin Layman, Holly Lechniak, Sandra Lee, Soo J. Lee, Daniel Lee Coury, Christa Lese Martin, Laurie Lesher, Hai Li, Deana Li, Natasha Lillie, Xiuping Liu, Marilyn Lopez, Catherine Lord, Kathryn Lowe, Malcolm D. Mallardi, Patricia Manning, Julie Manoharan, Richard Marini, Christa Martin, Gabriela Marzano, Andrew Mason, Sarah Mastel, Emily T. Matthews, James T. McCracken, Alexander P. McKenzie, Alexandra Miceli, Jacob J. Michaelson, Anna Milliken, Sarah Mohiuddin, Zeineen Momin, Michael J. Morrier, Stewart Mostofsky, Shwetha Murali, Donna Muzny, Vincent J. Myers, Jason Neely, Caitlin Nessner, Amy Nicholson, Melanie Niederhouser, Kaela O'Brien, Eirene O'Connor, Molly O’Neil, Brian J. O'Roak, Cesar Ochoa-Lubinoff, Jessica Orobio, Libby Orrick, Crissy Ortiz, Opal Y. Ousley, Lillian D. Pacheco, Samiza Palmer, Juhi Pandey, Anna Marie Paolicelli, Katherine G. Pawlowski, Karen L. Pierce, Joseph Piven, Samantha Plate, Jose Polanco, Marc Popp, Natalie Pottschmidt, Tiziano Pramparo, Lisa M. Prock, Hongjian Qi, Shanping Qiu, Angela L. Rachubinski, Kshitij Rajbhandari, Rishiraj Rana, Vai Ranganathan, Laurie Raymond, Rick Remington, Catherine E. Rice, Chris Rigby, Beverly E. Robertson, Nicki Rodriguez, Barbara Rodriguez, Katherine Roeder, Cordelia R. Rosenberg, Nicole Russo-Ponsaran, Elizabeth Ruzzo, Aniko Sabo, Mustafa Sahin, Andrei Salomatov, Sophia Sandhu, Susan Santangelo, Dustin E. Sarver, Jessica Scherr, Robert T. Schultz, Kathryn A. Schweers, Rebecca Shaffer, Swapnil Shah, Tamim Shaikh, Yufeng Shen, Amanda D. Shocklee, Lisa Shulman, Matthew Siegel, Andrea R. Simon, Laura Simon, Vini Singh, Steve Skinner, Christopher J. Smith, Kaitlin Smith, LeeAnne Green Snyder, Latha V. Soorya, Aubrie Soucy, Danielle Stamps, Morgan Steele, Alexandra N. Stephens, Colleen M. Stock, Catherine Sullivan, James S. Sutcliffe, James S. Sutcliffe, Amy Swanson, Maira Tafolla, Nicole Takahashi, Cora Taylor, Carrie Thomas, Taylor Thomas, Samantha Thompson, Jennifer Tjernagel, Tychele N. Turner, Maria Valicenti-McDermott, Bonnie Van Metre, Candace Van Wade, Jeremy Veenstra-Vanderweele, Mary Verdi, Brianna M. Vernoia, Natalia Volfovsky, Jermel Wallace, Corrie H. Walston, Jiayao Wang, Tianyun Wang, Zachary Warren, Lucy Wasserburg, Sabrina White, L. Casey White-Lehman, Ericka L. Wodka, Simon Xu, Wha S. Yang, Meredith Yinger, Sarah Youngkin, Timothy Yu, Lan Zang, Hana Zaydens, Haicang Zhang, Haoquan Zhao, Xueya Zhou, Allyson Zick.

Funding

This work was supported in part by a grant from the Simons Foundation (SPARK Award ID 383303) to EF.

Author information

Authors and Affiliations

  1. Departments of Psychiatry, Pediatrics & Behavioral Neuroscience, Oregon Health & Science University, 3181 SW Sam Jackson Park Road, Portland, OR, 97239, USA

    Eric Fombonne & Allyson Zick

  2. The Simons Foundation, New York, NY, USA

    LeeAnne Green Snyder, Amy Daniels, Pamela Feliciano & Wendy Chung

  3. Department of Pediatrics, Columbia University Medical Center, New York, NY, USA

    Wendy Chung

Authors
  1. Eric Fombonne
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  2. LeeAnne Green Snyder
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  3. Amy Daniels
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  4. Pamela Feliciano
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  5. Wendy Chung
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The SPARK Consortium

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  • , Zachary Warren
  • , Lucy Wasserburg
  • , Sabrina White
  • , L. Casey White-Lehman
  • , Ericka L. Wodka
  • , Simon Xu
  • , Wha S. Yang
  • , Meredith Yinger
  • , Sarah Youngkin
  • , Timothy Yu
  • , Lan Zang
  • , Hana Zaydens
  • , Haicang Zhang
  • , Haoquan Zhao
  • , Xueya Zhou
  •  & Allyson Zick

Contributions

EF designed the study, acquired the dataset, performed data and statistical analysis and wrote the manuscript; LGS participated in the study dataset acquisition and interpretation of results, and helped writing the manuscript; LGS, AD, PF, and WC contributed to the design of the overall SPARK study, to the SPARK data collection and they reviewed the manuscript; the SPARK consortium collected the SPARK data.

Corresponding author

Correspondence to Eric Fombonne.

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The Membership of The SPARK Consortium is provided in the “Acknowledgements”.

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Fombonne, E., Green Snyder, L., Daniels, A. et al. Psychiatric and Medical Profiles of Autistic Adults in the SPARK Cohort. J Autism Dev Disord 50, 3679–3698 (2020). https://doi.org/10.1007/s10803-020-04414-6

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