{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T01:12:43Z","timestamp":1787015563018,"version":"build-2736575974"},"reference-count":55,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2015,10,14]],"date-time":"2015-10-14T00:00:00Z","timestamp":1444780800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"published-print":{"date-parts":[[2016,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>While the medical profession often terms behaviours in individuals with Rett syndrome (RTT) in the second stage as \u2018autistic\u2010like\u2019, parents disagree with this description. The present study focuses on a comparison of parents' experiences with the social\u2010emotional behaviour of the child with RTT in the second and subsequent stages.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>In collaboration with the Dutch Rett Syndrome Organization, 51 parents of children with RTT in the Netherlands took part in the present study. Parents completed an online questionnaire to clarify their experiences of the social\u2010emotional behaviour of their children during and after the second stage of RTT. Both quantitative and qualitative analysis techniques have been used.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The results of the paired\u2010samples\n                      <jats:italic>t<\/jats:italic>\n                      \u2010test show that parents see significantly less social\u2010emotional behaviour in the children during the second stage of RTT than in the subsequent stages. Parents reported that their children did not seek as much interaction. From the parents' descriptions, it would seem that the children are willing but unable to interact with their environment.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Like previous research, our study leads to doubts about the appropriateness of the label \u2018autistic\u2010like\u2019 for the behaviour of individuals in the second stage of RTT. While behaviours of individuals with autism and individuals with RTT may resemble each other, quality and intentions may differ. Still, future studies are needed for further clarification.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jir.12233","type":"journal-article","created":{"date-parts":[[2015,10,14]],"date-time":"2015-10-14T09:03:53Z","timestamp":1444813433000},"page":"43-53","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Social\u2010emotional instability in individuals with Rett syndrome: parents' experiences with second stage behaviour"],"prefix":"10.1111","volume":"60","author":[{"given":"V.","family":"Munde","sequence":"first","affiliation":[{"name":"Department of Special Needs Education and Child Care University of Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C.","family":"Vlaskamp","sequence":"additional","affiliation":[{"name":"Department of Special Needs Education and Child Care University of Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"ter Haar","sequence":"additional","affiliation":[{"name":"Department of Special Needs Education and Child Care University of Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2015,10,14]]},"reference":[{"key":"e_1_2_5_2_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638280902846392"},{"key":"e_1_2_5_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/08830738060210091501"},{"key":"e_1_2_5_4_1","volume-title":"Diagnostic Statistical Manual of Mental Disorders","author":"American Psychiatric Association","year":"1994"},{"key":"e_1_2_5_5_1","doi-asserted-by":"crossref","DOI":"10.1176\/appi.books.9780890425596","volume-title":"Diagnostic Statistical Manual of Mental Disorders","author":"American Psychiatric Association","year":"2013"},{"key":"e_1_2_5_6_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2012.00034"},{"key":"e_1_2_5_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12093"},{"key":"e_1_2_5_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1088357610380042"},{"key":"e_1_2_5_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2012.10.011"},{"key":"e_1_2_5_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.seizure.2011.06.010"},{"key":"e_1_2_5_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.paid.2012.05.022"},{"key":"e_1_2_5_12_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638280150504171"},{"key":"e_1_2_5_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/00004703-199812000-00004"},{"key":"e_1_2_5_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2011.07.008"},{"key":"e_1_2_5_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/00001163-199810000-00006"},{"key":"e_1_2_5_16_1","doi-asserted-by":"publisher","DOI":"10.1080\/713661959"},{"key":"e_1_2_5_17_1","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1093\/oso\/9780192630834.003.0010","volume-title":"Rett Disorder and the Developing Brain","author":"Glaze D.","year":"2001"},{"key":"e_1_2_5_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2011.04071.x"},{"key":"e_1_2_5_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073811429859"},{"key":"e_1_2_5_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32361"},{"key":"e_1_2_5_21_1","article-title":"Recall bias can be a threat to retrospective and prospective research designs","volume":"3","author":"Hassan E.","year":"2005","journal-title":"The Internet Journal of Epidemiology"},{"key":"e_1_2_5_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2001.00289.x"},{"key":"e_1_2_5_23_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781446201107"},{"key":"e_1_2_5_24_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3148.2010.00603.x"},{"key":"e_1_2_5_25_1","first-page":"56","volume-title":"Research Methods for Clinical and Health Psychology","author":"Joffe H.","year":"2004"},{"key":"e_1_2_5_26_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2011.01404.x"},{"key":"e_1_2_5_27_1","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780192630834.001.0001","volume-title":"Rett Disorder and the Developing Brain","author":"Kerr A. M.","year":"2001"},{"key":"e_1_2_5_28_1","unstructured":"LeoneS.(2009)Evaluation of the Ghuman\u2010Folstein Screen for Social Interaction (SSI). (Electronic Thesis or Dissertation). Retrieved fromhttps:\/\/etd.ohiolink.edu(accessed 5 October 2015)."},{"key":"e_1_2_5_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rasd.2008.06.005"},{"key":"e_1_2_5_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-7610.2012.02540.x"},{"key":"e_1_2_5_31_1","doi-asserted-by":"publisher","DOI":"10.1352\/1944-7558-118.1.55"},{"key":"e_1_2_5_32_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2788.2002.00442.x"},{"key":"e_1_2_5_33_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1025066913283"},{"key":"e_1_2_5_34_1","doi-asserted-by":"publisher","DOI":"10.1177\/08830738030180100801"},{"key":"e_1_2_5_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1741-1130.2007.00104.x"},{"key":"e_1_2_5_36_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22124"},{"key":"e_1_2_5_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0387-7604(12)80166-5"},{"key":"e_1_2_5_38_1","doi-asserted-by":"publisher","DOI":"10.1001\/archneurol.2011.149"},{"key":"e_1_2_5_39_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rasd.2008.01.002"},{"key":"e_1_2_5_40_1","doi-asserted-by":"publisher","DOI":"10.1080\/13668250500488678"},{"key":"e_1_2_5_41_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2010.06.051"},{"key":"e_1_2_5_42_1","doi-asserted-by":"publisher","DOI":"10.1352\/0047-6765(2005)43[255:FEAWAC]2.0.CO;2"},{"key":"e_1_2_5_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.braindev.2011.09.002"},{"key":"e_1_2_5_44_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2011.03935.x"},{"key":"e_1_2_5_45_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-7610.2004.t01-1-00305.x"},{"key":"e_1_2_5_46_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.1993.tb11646.x"},{"key":"e_1_2_5_47_1","doi-asserted-by":"publisher","DOI":"10.1177\/088307389801300507"},{"key":"e_1_2_5_48_1","unstructured":"SchwartzmanJ. S. deLima VelossoR. D'AntinoM. E. F.&SantosS.(2013)Cognitive skills assessment in rett syndrome.Third European Rett Syndrome Conference Maastricht The Netherlands."},{"key":"e_1_2_5_49_1","doi-asserted-by":"publisher","DOI":"10.1159\/000337637"},{"key":"e_1_2_5_50_1","unstructured":"SteinbuschH. VonckenJ. W. KenisG. RuttenB. P. F.&CurfsL. M. G.(2013)Moving from the forebrain to the brainstem.Third European Rett Syndrome Conference Maastricht The Netherlands."},{"key":"e_1_2_5_51_1","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1093\/oso\/9780192630834.003.0012","volume-title":"Rett Disorder and the Developing Brain","author":"Trevarthen C.","year":"2001"},{"key":"e_1_2_5_52_1","doi-asserted-by":"publisher","DOI":"10.1177\/0143034311403058"},{"key":"e_1_2_5_53_1","doi-asserted-by":"publisher","DOI":"10.1177\/1362361302006004007"},{"key":"e_1_2_5_54_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.1992.tb00473.x"},{"key":"e_1_2_5_55_1","first-page":"33","article-title":"The autistic spectrum disorder: a current review","volume":"24","author":"Wolf\u2010Schein E.","year":"1996","journal-title":"Developmental Disabilities Bulletin"},{"key":"e_1_2_5_56_1","doi-asserted-by":"publisher","DOI":"10.1177\/1362361309338184"}],"container-title":["Journal of Intellectual Disability Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjir.12233","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjir.12233","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jir.12233","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,11]],"date-time":"2024-06-11T16:12:34Z","timestamp":1718122354000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jir.12233"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,10,14]]},"references-count":55,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2016,1]]}},"alternative-id":["10.1111\/jir.12233"],"URL":"https:\/\/doi.org\/10.1111\/jir.12233","archive":["Portico"],"relation":{},"ISSN":["0964-2633","1365-2788"],"issn-type":[{"value":"0964-2633","type":"print"},{"value":"1365-2788","type":"electronic"}],"subject":[],"published":{"date-parts":[[2015,10,14]]},"assertion":[{"value":"2014-09-26","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2015-09-08","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2015-10-14","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}