Keville S, Zormati P, Shahid A, Osborne C, Ludlow A K
Department of Psychology, Sport and Geography, University of Hertfordshire, College Lane, Hatfield, Herts, United Kingdom.
Int J Dev Disabil. 2023 Feb 3;70(7):1251-1261. doi: 10.1080/20473869.2023.2173835. eCollection 2024.
Selective mutism (SM) and autism frequently co-occur together, exacerbating social communication deficits and associated anxiety. However, professionals have lacked a readiness to diagnose SM and autism together, making the need to understand parental experiences of caring for a child with SM and autism crucial. The current study utilised Interpretative Phenomenological Analysis (IPA) to explore parents' experience of caring for children with SM and autism. Semi-structured interviews were conducted with eleven mothers and one father of children aged between 5 and 18 years. All children were diagnosed with SM and had undertaken, or were currently undertaking, an autism diagnostic process. Analysis of the transcripts resulted in the following themes: Complexities from co-occurring issues; The overwhelming impact of SM; The diagnostic journey; Finding solutions and advocacy. Judgements and minimisation of symptoms from educational and healthcare systems exacerbated delays in diagnosis preventing appropriate intervention. The complexities of caring for a child with SM and autism, alongside wider misunderstandings, exacerbated parental stress, impacting the family. Parental advocacy and safe environments provided opportunities for children to better manage contextually based mutism. Improvements in identification and compassionate understanding from wider systems by involving parents as key stakeholders are essential to improve this situation.
选择性缄默症(SM)和自闭症经常同时出现,加剧了社交沟通缺陷及相关焦虑。然而,专业人员并不愿意同时诊断SM和自闭症,因此了解父母照顾患有SM和自闭症孩子的经历至关重要。当前研究采用解释现象学分析(IPA)来探究父母照顾患有SM和自闭症孩子的经历。对11位母亲和1位父亲进行了半结构化访谈,他们的孩子年龄在5至18岁之间。所有孩子均被诊断为患有SM,且已经或正在接受自闭症诊断程序。对访谈记录的分析得出了以下主题:并发问题带来的复杂性;SM的巨大影响;诊断过程;寻找解决方案及维权。教育和医疗系统对症状的判断及轻视加剧了诊断延迟,阻碍了适当干预。照顾患有SM和自闭症孩子的复杂性,以及更广泛的误解,加剧了父母的压力,对家庭产生了影响。父母的维权行动和安全的环境为孩子更好地应对情境性缄默提供了机会。通过让父母作为关键利益相关者参与进来,提高更广泛系统的识别能力和给予同情理解,对于改善这种情况至关重要。