Table_3_“…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study.docx

IntroductionAdequate education, employment, and services for autistic individuals contribute significantly to their and their parents’ quality of life. Services and support for adults are dramatically more limited than those for children. The main purpose of this study was to explore how parents perceive factors supporting/hindering access to services, and how they assess the quality of services.
MethodsQualitative data provided by 12 parents via a semi-structured interview with a broader focus on parental quality of life and its factors were analyzed. Their autistic children were between 20 and 34 years of age. A thematic analysis was performed on parts of the narratives on their adult periods of life.
ResultsA complex pattern of parental perception of supportive and hampering factors influencing access to services unfolded. The sparsity of services/activities and reliable information on them made the space for autonomous decisions on service take highly limited. Parents have modest expectations on quality of services, evaluating them along two key aspects: a safe, positive atmosphere, and communication between parents and professionals. Other aspects of individualized autism-specific support were not or just rarely mentioned.
DiscussionParents perceive themselves as investing a lot of effort and resources in getting some form of regular service and/or activity for their adult child. However, these parental efforts often fail, their child becoming inactive, and dependent on their presence. This suggests system-level problems with services for autistic adults in Hungary, with literature showing it is not specific to this country.

引言
对自闭症个体提供充足的教育、就业及相关服务，对其自身及其父母的生活质量具有显著的积极影响。针对成年自闭症群体的服务与支持，相较儿童群体而言要匮乏得多。本研究的核心目的在于探究家长如何认知影响服务获取的支持性与阻碍性因素，以及他们如何评估服务质量。

研究方法
本研究分析了12名家长通过半结构化访谈获取的质性数据，访谈的核心议题聚焦于家长的生活质量及其影响因素。受访家长的自闭症子女年龄介于20至34岁之间。研究人员针对受访者关于其成年阶段生活的叙述内容开展了主题分析。

研究结果
研究揭示了家长对影响服务获取的支持性与阻碍性因素的认知呈现复杂格局。服务与相关活动的稀缺性，以及可靠信息的匮乏，极大限制了家长为子女自主选择服务的空间。家长对服务质量的期望较为适度，他们主要从两个关键维度进行评估：一是安全且积极的服务氛围，二是家长与专业人员之间的沟通情况。针对自闭症的个性化专属支持等其他方面，则几乎未被提及。

讨论
家长们表示，为成年子女争取常规服务或活动时，自身投入了大量精力与资源。然而，这些努力往往收效甚微，子女最终会变得无所事事，且对家长的照料产生依赖。这一结果反映出匈牙利成年自闭症群体服务体系存在系统性问题，而现有文献表明，该问题并非匈牙利所独有。