Clinical Research

This multi-site study is building a critical reference collection of phenotypic and genetic data on youth severely affected by autism, accessible to investigators worldwide. This study has enrolled and rigorously phenotyped over 1400 youth and already generated over 25 research publications. This work has also produced key evidence and standards for inpatient psychiatric treatment of the developmentally delayed population. Funded by the Simons Foundation and the Nancy Lurie Marks Family Foundation.

This study capitalizes on our inpatient unit’s unique access to 24 hour monitoring of youth severely affected by autism to investigate developmental changes in sleep and the circadian regulation of sleep may contribute to the escalation of challenging behavior. This study will then move to the outpatient setting to further investigate these patterns in the home environment. This study is funded by the National Institute of Child and Human Development.

In collaboration with Principal Investigator Robin Gabriels, PsyD of the University of Colorado, this study seeks to uncover the physiologic mechanisms that may underlie the benefits produced by therapeutic horseback riding in youth with autism and psychiatric disorders. This study is funded by the National Institute of Child and Human Development.

• Stedman A, Taylor BJ, Erard M, Peura C and Siegel M. Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature, Journal of Autism and Developmental Disorders 2018 Dec 10. Doi.org/10.1007/s10803-018-3844-y.
• Taylor BJ, Sanders KB, Pedersen KA…and Siegel M, Inpatient Psychiatric Treatment of Serious Behavioral Problems in Children with Autism Spectrum Disorder (ASD): Specialized Versus General Inpatient Units. J Autism Dev Disord. 2018 Nov 21. Doi.org/10.1007/s10803-018-3816-2.
• Kuriakose S, Filton B, Marr M…Siegel M, Horowitz, S, and Havens J, Does an Autism Spectrum Disorder care pathway improve care for children and adolescents with ASD in inpatient psychiatric units? J Autism Dev Disord. 2018 July 3. Doi: 10.1007/s10803-018-3666-y.
• McGuire K and Siegel M, Psychiatric hospital treatment of youth with autism spectrum disorder in the United States: needs, outcomes, and policy. Int Rev Psychiatry. 2018 Feb;30(1):110-115. doi: 10.1080/09540261.2018.1433134. Epub 2018 Mar 14.
• Mazefsky CA, Yu L, White SW, Siegel M, Pilkonis PA. The Emotion Dysregulation Inventory: Psychometric properties and item response theory calibration in an Autism Spectrum Disorder Sample. Autism Research 2018, 11: 928-941.[Article]
• Handen BL, Mazefsky CA, Gabriels RL, Pedersen KA, Wallace M, Siegel M.  Risk factors for self-injurious behavior in an inpatient psychiatric sample of children with Autism Spectrum Disorder.  J Aut Devel Disord. 2018 Jan 24. [Article]
• Goodwin, MS, Ozdenizci, O, Tian, P, Cumpanasoiu, C, Guo, A, Stedman, A, Peura, C, Mazefsky, C, Siegel, M, Erdogmus, D, & Ioannidis, I (2018). Predicting proximal aggression onset in minimally-verbal youth with autism spectrum disorder using preceding physiological signals. In Proceedings of PervasiveHealth ’18, 12th EAI International Conference on Pervasive Computing Technologies for Healthcare, May 21-24, 2018, ACM, New York, NY, USA. [Article]
• Pedersen KA, Santangelo SL, Gabriels RL, Righi G, Erard M, Siegel M.  Behavioral outcomes of specialized psychiatric hospitalization in the Autism Inpatient Collection (AIC): a multisite comparison.  J Autism Dev Disord. 2017 Nov 23.  Doi: 10.1007/s10803-017-3366-z. [Epub ahead of print] PMID: 29170939 [Article]
• Sannar EM, Palka T, Beresford C, Peura C, Kaplan D, Verdi M, Siegel M, Kaplan S, Grados M; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC).  Sleep problems and their relationship to maladaptive behavior severity in psychiatrically hospitalized children with Autism Spectrum Disorder (ASD). J Autism Dev Disord.  2017 Oct 30.  Doi: 10.1007/s10803-017-3362-3. [Epub ahead of print] PMID: 29086209 [Article]
• Lerner MD, Mazefsky CA, Weber RJ, Transue E, Siegel M, Gadow KD; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Verbal ability and psychiatric symptoms in clinically-referred inpatient and outpatient youth with ASD. J Autism Devel Disord. 2017 Oct 16.  Doi: 10.1007/s10803-017-3344-5. [Epub ahead of print] PMID:  29038930 [Article]
• Horowitz LM, Thurm A, Farmer C, Mazefsky C, Lanzillo E, Bridge JA, Greenbaum R, Pao M, Siegel M; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Talking about death or suicide: Prevalence and clinical correlates in youth with Autism Spectrum Disorder in the psychiatric inpatient setting. J Autism Dev Disord. 2017 June 17.  Doi: 10.1007/s10803-017-3180-7. [Epub ahead of print] PMID: 28624965 [Article]
• Williams DL, Siegel M, Mazefsky CA; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Problem behaviors in Autism Spectrum Disorder: association with verbal ability and adapting/coping skills. J Autism Dev Disord. 2017 June 8. Doi: 10.1007/s10803-017-3179-0. [Epub ahead of print] PMID:  28597186 [Article]
• Brenner J, Pan Z, Mazefsky C, Smith KA, Gabriels R, Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Behavioral symptoms of reported abuse in children and adolescents with Autism Spectrum Disorder in inpatient settings.    J Autism Dev Disord. 2017 June 7.  Doi: 10.1007/s10803-017-3183-4. [E pub ahead of print]  PMID: 28593599 [Article]
• Righi G, Benevides J, Mazefsky C, Siegel M, Sheinkopf SJ, Morrow EM, Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC).  Predictors of inpatient psychiatric hospitalization for children and adolescents with Autism Spectrum Disorder.  J Autism Dev Disord. 2017 May 23. Doi: 10.1007/s10803-017-3154-9. [Epub ahead of print]  PMID: 28536960 [Article]
• Wink LK, Pedapati EV, Adams R, Erickson CA, Pedersen KA, Morrow EM, Kaplan DM, Siegel M. Characterization of medication use in a multicenter sample of pediatric inpatients with Autism Spectrum Disorder.  J Autism Dev Disord.  2017 May 17. Doi: 10.1007/s10803-017-3153-x. [Epub ahead of print]  PMID:  28516426 [Article]
• Mazefsky CA, Day TN, Siegel M, White SW, Yu L, Pilkonis PA; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Development of the Emotion Dysregulation Inventory: a PROMIS®ing method for creating sensitive and unbiased questionnaires for Autism Spectrum Disorder.  J Autism Dev Disord. 2016 Oct 3.  Doi: 10.1007/s10803-016-2907-1. [Epub ahead of print]  PMID:  27699685. PMCID:  PMC5378674 [Article]
• Siegel M, Smith KA, Mazefsky C, Gabriels RL, Erickson C, Kaplan D, Morrow EM, Wink L, Santangelo SL; The autism inpatient collection: methods and preliminary sample description; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). Mol Autism. 2015 Nov 10;6:61. doi: 10.1186/s13229-015-0054-8. eCollection 2015 [PubMed]
• McGuire K, Erickson C, Gabriels RL, Kaplan D, Mazefsky C, McGonigle J, Meservy J, Pedapati E, Pierri J, Wink L, Siegel M. Psychiatric Hospitalization of Children With Autism or Intellectual Disability: Consensus Statements on Best Practices. J Am Acad Child Adolesc Psychiatry. 2015 Dec;54(12):969-71. doi: 10.1016/j.jaac.2015.08.017. [PubMed]
• Siegel M, Milligan B, Chemelski B, Payne D, Ellsworth B, Harmon J, Teer O, Smith, KA.  Specialized Inpatient Psychiatry for Serious Behavioral Disturbance in Autism and Intellectual Disability.  J Autism Dev Disord 2014 DOI 10.1007/s10803-014-2157-z [Article]
• Siegel M, Beresford CA, Bunker M, Verdi M, Vishnevetsky D, Karlsson C, Teer O, Stedman A, Smith KA.  Preliminary Investigation of Lithium for Mood Disorder Symptoms in Children and Adolescents with Autism Spectrum Disorder.  J Child Adolesc Psychopharmacol. 2014 Aug 5. [Epub ahead of print] PMID: 25093602 [Article]
• Volkmar F, Siegel M, Woodbury-Smith M, King B, McCracken J, State M, and the American Academy of Child and Adolescent Psychiatry (AACAP) Committee on Quality Issues (CQI).  Practice Parameter for the Assessment and Treatment of Children and Adolescents With Autism Spectrum Disorder [Article]
• Siegel, M and Gabriels, R.L. Psychiatric hospital treatment of children with autism and serious behavioral disturbance. Child and Adolescent Psychiatric Clinics of North America 2014;23(1);125-142. [Article]
• Gabriels RL, Agnew JA, Beresford C, Morrow MA, Mesibov G, Wamboldt M. Improving psychiatric hospital care for pediatric patients with autism spectrum disorders and intellectual disabilities. Autism Res Treat. 2012;2012:685053. doi: 10.1155/2012/685053. Epub 2012 Jun 19. [PubMed]
• Siegel M, Doyle K, Chemelski B, Payne D, Ellsworth B, Harmon J, Robbins D, Milligan B, Lubetsky M. Specialized inpatient psychiatry units for children with autism and developmental disorders: a United States survey. J Autism Dev Disord. 2012 Sep;42(9):1863-9. doi: 10.1007/s10803-011-1426-3. [Article]
  
• Siegel, M. and King, B.H. Acute management of autism spectrum disorders. Child Adolescent Psychiatric Clinics of North America 2014;23-xii-xv.[ScienceDirect]
• Autism Spectrum Disorder (Pittsburgh Pocket Psychiatry) Martin J. Lubetsky (Editor), Benjamin L. Handen (Editor), John J. McGonigle (Editor) [Book]
• Mazefsky CA, Herrington J, Siegel M, Scarpa A, Maddox BB, Scahill L, White SW. The Role of Emotion Regulation in Autism Spectrum Disorder [Article]

• Simons Foundation Autism Research Initiative (SFARI)
• Simons Foundation Powering Autism Research for Knowledge (SPARK)
• Nancy Lurie Marks Family Foundation
• Autism Brain Net
• Autism Speaks
• TakesBRAINS.org

Investigators and Staff

Briana Taylor, PhD Visiting Scientist, Dr. Taylor is an Assistant Professor of Psychiatry at Tufts University School of Medicine and a Faculty Scientist I at MaineHealth Institute for Research. She is a health psychologist studying the relationship of sleep, circadian rhythm and daytime behavior in youth with autism.

Matthew Siegel, MD, Investigator, Dr. Siegel is an Associate Professor of Psychiatry and Pediatrics of Tufts University School of Medicine, Vice President of Medical Affairs, Developmental Disorders Service Line of Maine Behavioral Healthcare, and Faculty Scientist II at MaineHealth Institute for Research. He is studying severe forms of autism, prediction of challenging behavior utilizing wearable biosensors, and the physiologic mechanisms that underlie the effects of therapeutic horseback riding.

Research Staff

Melanie Hounchell, BA, Research Program Director
Nichole Goldfeder, BA, Clinical Research Coordinator I
Talia Greene, BA, Clinical Research Coordinator I
Thea Kastelic, BA, Research Technician and Visiting Scientist
Milleah Sawtelle, BS, Clinical Research Coordinator II
Ellyn Touchette, Data Manager