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      Improving pain‐related communication in children with autism spectrum disorder and intellectual disability

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          Abstract

          The communication of pain in individuals with co‐morbid Autism Spectrum Disorder and intellectual disability (ASD‐ID) is largely unexplored. The communication deficits associated with ASD‐ID can result in nonverbal behavior such as self‐injurious behavior, aggression, irritability, and reduced activity as a means to communicate that pain is present. The objective of this study was to determine whether a behavioral‐based educational intervention could increase the pain‐related communication of children with ASD‐ID who experience pain frequently. Specifically, the study aimed to determine if children with ASD‐ID can label the location of their pain or quantify pain severity and request pain relief. The sample included three children with ASD‐ID who experienced pain frequently. The intervention utilized educational materials and behavioral reinforcements and the intervention was conducted using a series of case studies. Pain was assessed daily by caregivers using the Non‐Communicating Children's Pain Checklist—Postoperative (NCCPC‐PV) and the ability of the individual to identify and express pain was recorded using the Wong Baker FACES Pain (WBFPS) Scale. Challenging behavior was recorded based on frequency count. The results indicated that all participants displayed the ability to independently respond to a question about how they were feeling by vocalizing the location of pain or indicating their level of pain on the WBFPS and requesting pain relief. The results suggest a role for behavioral‐based educational interventions to promote communication of pain in people with ASD‐ID.

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          Most cited references26

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          The revised International Association for the Study of Pain definition of pain: concepts, challenges, and compromises

          The current International Association for the Study of Pain (IASP) definition of pain as "An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage" was recommended by the Subcommittee on Taxonomy and adopted by the IASP Council in 1979. This definition has become accepted widely by health care professionals and researchers in the pain field and adopted by several professional, governmental, and nongovernmental organizations, including the World Health Organization. In recent years, some in the field have reasoned that advances in our understanding of pain warrant a reevaluation of the definition and have proposed modifications. Therefore, in 2018, the IASP formed a 14-member, multinational Presidential Task Force comprising individuals with broad expertise in clinical and basic science related to pain, to evaluate the current definition and accompanying note and recommend whether they should be retained or changed. This review provides a synopsis of the critical concepts, the analysis of comments from the IASP membership and public, and the committee's final recommendations for revisions to the definition and notes, which were discussed over a 2-year period. The task force ultimately recommended that the definition of pain be revised to "An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage," and that the accompanying notes be updated to a bulleted list that included the etymology. The revised definition and notes were unanimously accepted by the IASP Council early this year.
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            Pain in children: comparison of assessment scales.

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              The Co-Morbidity Burden of Children and Young Adults with Autism Spectrum Disorders

              Objectives Use electronic health records Autism Spectrum Disorder (ASD) to assess the comorbidity burden of ASD in children and young adults. Study Design A retrospective prevalence study was performed using a distributed query system across three general hospitals and one pediatric hospital. Over 14,000 individuals under age 35 with ASD were characterized by their co-morbidities and conversely, the prevalence of ASD within these comorbidities was measured. The comorbidity prevalence of the younger (Age<18 years) and older (Age 18–34 years) individuals with ASD was compared. Results 19.44% of ASD patients had epilepsy as compared to 2.19% in the overall hospital population (95% confidence interval for difference in percentages 13.58–14.69%), 2.43% of ASD with schizophrenia vs. 0.24% in the hospital population (95% CI 1.89–2.39%), inflammatory bowel disease (IBD) 0.83% vs. 0.54% (95% CI 0.13–0.43%), bowel disorders (without IBD) 11.74% vs. 4.5% (95% CI 5.72–6.68%), CNS/cranial anomalies 12.45% vs. 1.19% (95% CI 9.41–10.38%), diabetes mellitus type I (DM1) 0.79% vs. 0.34% (95% CI 0.3–0.6%), muscular dystrophy 0.47% vs 0.05% (95% CI 0.26–0.49%), sleep disorders 1.12% vs. 0.14% (95% CI 0.79–1.14%). Autoimmune disorders (excluding DM1 and IBD) were not significantly different at 0.67% vs. 0.68% (95% CI −0.14-0.13%). Three of the studied comorbidities increased significantly when comparing ages 0–17 vs 18–34 with p<0.001: Schizophrenia (1.43% vs. 8.76%), diabetes mellitus type I (0.67% vs. 2.08%), IBD (0.68% vs. 1.99%) whereas sleeping disorders, bowel disorders (without IBD) and epilepsy did not change significantly. Conclusions The comorbidities of ASD encompass disease states that are significantly overrepresented in ASD with respect to even the patient populations of tertiary health centers. This burden of comorbidities goes well beyond those routinely managed in developmental medicine centers and requires broad multidisciplinary management that payors and providers will have to plan for.
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                Author and article information

                Contributors
                helena.lydon@nuigalway.ie
                Journal
                Paediatr Neonatal Pain
                Paediatr Neonatal Pain
                10.1002/(ISSN)2637-3807
                PNE2
                Paediatric & Neonatal Pain
                John Wiley and Sons Inc. (Hoboken )
                2637-3807
                28 February 2022
                March 2022
                : 4
                : 1 , Pain in children with IDD ( doiID: 10.1111/pne2.v4.1 )
                : 22-32
                Affiliations
                [ 1 ] School of Psychology and Centre for Pain Research and Applied Behaviour Research Clinic National University of Ireland Galway UK
                Author notes
                [*] [* ] Correspondence

                Helena K. Lydon, School of Psychology, National University of Ireland, Galway, UK.

                Email: helena.lydon@ 123456nuigalway.ie

                Author information
                https://orcid.org/0000-0002-3540-6639
                Article
                PNE212076
                10.1002/pne2.12076
                8975218
                35546916
                849456de-ce01-4384-af90-7ce50f341fd4
                © 2022 The Authors. Paediatric and Neonatal Pain published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 18 February 2022
                : 31 December 2020
                : 22 February 2022
                Page count
                Figures: 2, Tables: 2, Pages: 11, Words: 6917
                Categories
                Original Article
                Original Article
                Custom metadata
                2.0
                March 2022
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.5 mode:remove_FC converted:10.05.2022

                autism spectrum disorder,challenging behavior,intellectual disability,pain,verbal operants

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