The Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC) is a research platform of specialized child psychiatry hospital units that serve children and adolescents with autism and developmental disorders.
Each year, more than 1,000 children and adolescents with autism and serious behavioral disturbance are admitted to the five specialized psychiatric hospital units that comprise the network. The patient population is heavily weighted toward individuals severely affected by autism. The goal is to develop a comprehensive registry of clinical and biological data on severely affected children and adolescents with autism. We are investigating the dimensions of expressive language ability, emotional regulation, psychiatric co-morbidity, aggression, self-injurious behavior and intelligence, and the relationships among these critical factors.
RESEARCH PROGRAM: For more information about this research program, contact Mary Verdi, Program Manager firstname.lastname@example.org or (207) 661-7608
TREATMENT OPTIONS: If you are looking for information about possible treatment options for your child, please click on the “Research Sites” tab below and click on the hospital to learn more about the specialized hospital unit
For more information about our participating centers, please see the Research Sites tab below.
Individuals severely affected by an autism spectrum disorder, particularly those with intellectual disability, significant expressive language impairments or self-injurious behavior, have been understudied. Up to 50 percent of children with autism fail to develop functional language, 30 to 50 percent have intellectual disability, and up to 55 percent have a lifetime incidence of self-injurious behavior.
Adequate phenotypic and biological data from severely affected individuals are lacking. This gap in our knowledge is particularly striking given that communicative and cognitive abilities are the best predictors of long-term outcomes in children with autism. Barriers to studying severely affected children include challenges in their recruitment and participation in outpatient research studies, limited contact of most investigators with this population, and a relative lack of validated measures for characterizing these individuals.
The Autism Inpatient Collection (AIC) phenotypic database and biorepository is supported by a grant from the Simons Foundation Autism Research Initiative and the Nancy Lurie Marks Family Foundation, (SFARI #296318 to M.S.)
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Children’s Hospital Colorado
Robin Gabriels, PsyD – Co-Investigator
Giulia Righi, PhD – Co-Investigator
Spring Harbor Hospital
Matthew Siegel, MD – Director, Principal Investigator
Susan Santangelo, ScD – Co-Principal investigator & Director, Center for Psychiatric Research
Cincinnati Children’s Hospital Medical Center
Martin Lamy, MD – Co-Investigator
Computational Behavioral Science Lab
Matthew S. Goodwin, PhD – Co-Investigator
Western Psychiatric Institute and Clinic of UPMC
Carla Mazefsky, PhD – Co-Investigator
- 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]
News & Press
Autism Science Foundation – Day of Learning
Dr. Matthew Siegel’s Presentation
MaineHealth Leading Study of Potential “Game Changer” For Families Affected by Autism
Portland Press Herald
Wearable Sensors May Predict Aggression in People with Autism
Spectrum | Autism Research News
Demand Grows for Inpatient ASD and ID Programs
Interview with Dr. Matthew Siegel
New England Psychologist
Raising a Child with Autism
Dr. Matthew Siegel, guest speaker
MPBN News (PBS)
Dr. Matthew Siegel Top 50 Bold Visionaries in Maine
Maine Magazine – page 4
Severe autism, often slighted, now targeted for study
New research collaborative to study severe autism
Maine hospitals land $1.2 million autism research grant
Portland Press Herald
Emotion regulation, physiologic arousal, and challenging behaviors:
Up to two-thirds of youth with Autism Spectrum Disorder (ASD) develop aggression. However, we know little about its course in ASD and the reasons for its emergence. Aggression in ASD often becomes so problematic that multiple medications are attempted, despite risk of adverse effects and inconsistent success. Aggression is particularly impairing and treatment refractory in the 30-40% of youth with ASD who are minimally verbal (MV-ASD). Their inability to self-report distress makes the appearance of aggression unpredictable and thus dangerous, which leads to their exclusion from foundational educational, social, and familial experiences. This predicament accelerates negative trajectories and increases health care costs.
Our aim in this exploratory pilot study is to reduce the impact of aggression by examining physiological biomarkers of the onset of aggression onset, and use measures of physiological arousal, emotion regulation, and inhibitory control to identify processes that underlie behavioral dysregulation.