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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• 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]
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.