【英语新闻】【双语阅读】美国孤独症患儿比例达到150：数字的背后

The US Centers for Disease Control and Prevention (CDC) has released new figures for autism prevalence in the United States. They now give a prevalence of 1 in 50, but this story, like most autism-related stories, goes deeper than the numbers. 美国疾病和控制中心（CDC）发布了美国孤独症患病率的最新数字。如今，他们给出的数字是1/50，但与大多数与孤独症有关的文章一样，本文没有停留在这些数字之上，而是进行了更深的挖掘。 First, this prevalence estimate doesn’t focus only on 8-year-olds, the population used for deriving the 1 in 88 number reported in 2012. Instead, it encompasses the number of diagnosed autistic people walking around in 2011 and 2012 who were ages 6 to 17. The 2007 percentage of the population fitting that description was 1.16%. These new numbers put that value for 2011-2012 at 2%. 首先，此次患病率估算不仅仅针对八岁儿童，2012年时CDC就曾取样该年龄段儿童并得出了1/88的结果。而此次研究包括了2011至2012年间6至17岁的孤独症确诊人数。2007年，符合该描述的确诊病例占人口比例为1.16%。新数据显示，2011至2012年的这一数值达到了2%。 From the CDC’s report [ PDF]: 摘自CDC的： The magnitude of the increase was greatest for boys and for adolescents aged 14–17. Cohort analyses revealed consistent estimates of both the prevalence of parent-reported ASD (autism spectrum disorder) and autism severity ratings over time. Children who were first diagnosed in or after 2008 accounted for much of the observed prevalence increase among school-aged children (those aged 6–17). School-aged children diagnosed in or after 2008 were more likely to have milder ASD and less likely to have severe ASD than those diagnosed in or before 2007. 患病率增幅最大的群体是男孩和14到17岁的青少年。队列显示，父母报告的孤独症谱系障碍（ASD）患病率和自闭症严重程度数据两者相互吻合。2008年或以后首次确诊的患儿数增长占所观测到的6到17岁学龄儿童患病率增长的很大一部分。相较于2007年或以前确诊的病例，2008年或以后确诊的学龄儿童患有轻度ASD的可能性更大，而患有重度ASD的可能性更小。 According to the CDC, hidden within these numbers is the finding that most of the increase from 2007 to now occurred in school-aged children. In other words, given that it’s possible to diagnose autism as early as age 18 months and usually by age 5, many of these new autism diagnoses were in children who received them relatively later. Children who were, therefore, walking around for quite a few years with autism that went unrecognized … and uncounted. That fits with the idea that a lot of the increase in autism we’ve seen in the last decade has much to do with greater awareness and identification. 据CDC报告，这些数字中所隐含的信息是，从2007年至今增加的病例大多出现在学龄儿童群体。换言之，鉴于孤独症的早期确诊甚至可在婴儿18个月时做出，并且通常是在5岁前就被发现，许多新增病例是较晚才确诊的儿童。因此，一些确实患有孤独症的儿童，患有孤独症多年而未被发现……并且没有被计入在内。这契合了一个观点，即过去十年里我们所见的许多孤独症新增病例与孤独症认识提高和鉴别能力增强有很大关系。 The CDC’s information comes from parent reports, acquired by random telephone surveys. Parents answered questions about the ASD diagnosis and severity, and the age and year the child was diagnosed. When the CDC did this study in 2007, the results relied on information for 63, 967 children; for 2011-2012, that number was slightly higher at 65, 556. CDC的信息来自于随机电话调查所掌握的家长报告。家长们回答了关于ASD诊断和严重程度的问，以及患儿的年龄和确诊年份。2007年美国疾病和控制中心做此研究时，最终结果是基于63,967名儿童的信息；在2011到2012年间，样本人数稍有上升，为65,556人。 From 2007 to 2013, parent-reported autism prevalence increased significantly in all age groups in the 6-17 range and increased for boys from 1.8% to 3.23%. Girls also showed an increase, but not as dramatic, from 0.49% to 0.70%. Autism among children ages 14 to 17 was up more than 1%, compared to children in the youngest, 6 to 9 age group (0.5%). In 2007, this older group, born in the 1990s, was less likely to have ASD than younger children. 从2007到2013年期间，6到17岁间各年龄组家长所报告的孤独症患病率显著增加，且男孩群体患病率从1.8%增至3.23%。女孩群体患病率也有所增加，但没有那么明显，从0.49%升至0.7%。14到17岁年龄段儿童的孤独症患病率增幅超过1%，相比之下，6到9岁年龄段患病率增加了0.5%。2007年，与较小年龄组的孩子相比，90后出生的较大年龄组患ASD的可能性更低。 Autism severity ratings (or, as a friend of mine analogizes, octane rating) also was revealing. Children ages 2 to 13 in 2007 and diagnosed by that year — and who were thus 6 to 17 in 2011-2012 — showed no changes in ASD severity across years. However, children in the 6 to 17 bracket who were diagnosed after 2007 were more likely to be rated as having “mild” ASD (6.9% for 2011-2012 versus 16.9% for 2007), suggesting that greater awareness and diagnostic capture explain the ASD increase in this group. 孤独症严重程度评级（我的一位朋友将其类比成“辛烷等级”——交通工具所用燃料的抵抗震爆指标——译注）也能说明些问题。2007年确诊的2到13岁的儿童（在2011到2012年间为6到17岁）在ASD严重程度上没有随着时间的推移而现出变化。然而，2007年后确诊的6到17岁儿童更有可能被评为患有“轻度”ASD（2011到2012年间的比例为6.9%，而2007年的比例为16.9%），这说明认识以及诊断捕捉的改善是该群体中ASD患病增加的原因。 The CDC authors observe that the 14% of children ages 14 to 17 who were diagnosed at age 7 or later received their diagnosis “well beyond” the time when autism signs and symptoms become clear. In addition, more than half these children were classified as having “mild” ASD, according to their parents. The CDC authors say, CDC撰写该报告的作者们注意到，14到17岁的儿童中有14%是在7岁或以后被确诊的，而孤独症迹象和症状远在这以前就已经显现出来了。此外，根据这些孩子的父母所提供的信息，其中超过一半的人患有“轻度”ASD。CDC的作者写道： Together, these findings suggest that the increase in prevalence of parent-reported ASD may have resulted from improved ascertainment of ASD by doctors and other health care professionals in recent years, especially when the symptoms are mild. Changes in the ascertainment of ASD could occur because of changes in ASD awareness among parents or health care professionals, increased access to diagnostic services, changes in how screening tests or diagnostic criteria are used, or increased special education placements in the community. 这些发现共同说明，父母报告的ASD患病率增加可能是近年来医生和医疗保健专业人员对ASD的确认水平有所提高所致，尤其是当症状较轻时。ASD认定方面出现的变化可能是由于父母、医疗保健专业人员对ASD的认识发生变化，获得诊断服务的途径增多，筛查或诊断使用方式的变化，或者社区里特殊教育部署的增多。 The report concludes: 该报告的结论是： Increases in the prevalence of parent-reported ASD continued through 2011–2012, and much of the recent increase—especially for children aged 6–13—was the result of diagnoses of children with previously unrecognized ASD. 2011至2012年间，父母报告的ASD患病率持续增加，近来增加的病例中有很多是之前未发现的ASD患童刚刚得到了确诊。 You will probably see a lot of headlines about the 1 in 50. Some organizations might even try to use those numbers to scare people, to talk about an “epidemic” or a “tsunami.” But if you look at the numbers and the report itself, you’ll see that overall, the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them. The next step is getting better at accepting autistic people, seeing their potential, and ensuring the supports and resources they need to fulfill that potential. 你可能将看到许多有关“1/50”的新闻标题。许多组织甚至可能设法用这些数字去吓唬人，来大谈特谈“流行病”或“孤独症大爆发”。但如果看看这些数字和报告本身，你将发现整体而言，生来患有孤独症的人未必正在大幅增加。只是我们越来越善于将这些人纳入统计。下一步将是更好地接受孤独症人群、发掘他们的潜能，并确保为其发挥潜能提供所需的支持和资源。