随着自闭症诊断的日益普及,卫生系统官员希望了解,在美国患有自闭症的儿童中,轻、中度自闭症患儿和重度自闭症患儿(表现包括智力极为低下、不具备语言能力)的占比分别是多少。
4月19日发布的研究成果实现了这一领域“零的突破”,该研究显示,虽然重度自闭症的增速远低于轻度自闭症,但也出现了明显上升。
自闭症科学基金会(Autism Science Foundation,一家游说、研究团体)的执行董事艾莉森•辛格说:“要想做好应有准备、满足重度自闭症患儿的需求(包括提供相应的健康与教育服务),我们必须先弄清楚这一群体的规模。”
辛格是一名25岁重度自闭症女性患者的母亲,也是这份由《公共卫生报告》(Public Health Reports)期刊发表的论文的共同作者。美国疾病控制与预防中心(Centers for Disease Control and Prevention)的科学家领导了这项研究。
虽然自闭症的诊断已经开展了至少80年时间,但从未有人对美国儿童中重度自闭症患儿的占比进行统计,此次研究实现了这一领域“零的突破”。直到一年多前,一个由自闭症专家组成的国际委员会才确定了重度自闭症的定义,纳入了智商低于50和/或不具备语言交流能力的标准。
根据这一定义,此次研究发现,在8岁前被诊断患有自闭症的美国儿童中,有约四分之一属于重度自闭。也就是说,美国有超过11万名小学适龄儿童患有重度自闭症。
诊断自闭症时不进行血液或生物测试,而是以儿童的行为模式作为判定标准。传统上,只有在患儿具有严重的语言障碍、社交障碍或异常重复行为时才会被诊断为自闭症。但随着定义内涵的逐渐扩大,一系列相对温和的症状也被纳入了该病症的范畴。
研究人员查阅了2000年至2016年间2万多名具有自闭症相关症状的8岁儿童的学习、医疗记录。
他们发现,重度自闭症患儿所占的比例从2000年的千分之三增长到了2016年的千分之五,轻度自闭症患儿的比例在此期间则是从千分之四增长到了千分之十四。
研究人员发现,轻度自闭症在男孩和白人儿童中更为常见,重度自闭症在女孩中的发病率则较高。
美国疾病控制与预防中心上个月发布的一项研究发现,在美国,黑人和西班牙裔儿童被诊断为自闭症的比例高于白人儿童,而在前几年还是白人儿童出现自闭症的比例更高。专家指出,这种变化可能与筛查、服务得到改善以及社会对自闭症的认识、宣传得到提高有关。据美国疾病控制与预防中心估计,2020年,在8岁儿童中,每36人中就有1人患有自闭症。
此次研究发现,在重度自闭症的占比方面,不同种族之间存在巨大差异。在患有自闭症的黑人儿童中,37%为重度自闭。而在西班牙裔和白人自闭症儿童中,这一数字分别为约三分之一和约五分之一。
该研究的第一作者、供职于美国疾病控制与预防中心的米歇尔·休斯说,要想了解造成上述差异的原因,还需要进行更多研究。
辛格说,这项研究的发布表明,美国疾病控制与预防中心已经认识到,“泛自闭症障碍的诊断标准过于宽泛,(即便同为自闭症患者,在患病程度不同的情况下)其需求大相径庭”。她说,相关数据可以帮助学校和家人更好地理解自闭症患者的需求。
加州大学河滨分校(University of California at Riverside)自闭症研究人员扬·布莱彻认为,这份报告有利有弊。
她说,以智商50作为患儿是否为重度自闭症的判定标准可能并不妥当。她就曾经看到一些智商在70以上的患儿表现出重度自闭症相关症状,比如转圈或重复无意义的话语等。
她说:“判断患儿是否为重度自闭还是要看症状才行。”
她担心那些未达标准的患儿可能得不到与符合相关标准的患儿相同的关注和帮助。
她说:“我们要再接再厉,做好各层面的工作。”(财富中文网)
美联社健康与科学编辑部(Associated Press Health and Science Department)得到了霍华德·休斯医学研究所科学与教育媒体组(Howard Hughes Medical Institute’s Science and Educational Media Group)的支持。美联社对本文所有内容全权负责。
译者:梁宇
审校:夏林
随着自闭症诊断的日益普及,卫生系统官员希望了解,在美国患有自闭症的儿童中,轻、中度自闭症患儿和重度自闭症患儿(表现包括智力极为低下、不具备语言能力)的占比分别是多少。
4月19日发布的研究成果实现了这一领域“零的突破”,该研究显示,虽然重度自闭症的增速远低于轻度自闭症,但也出现了明显上升。
自闭症科学基金会(Autism Science Foundation,一家游说、研究团体)的执行董事艾莉森•辛格说:“要想做好应有准备、满足重度自闭症患儿的需求(包括提供相应的健康与教育服务),我们必须先弄清楚这一群体的规模。”
辛格是一名25岁重度自闭症女性患者的母亲,也是这份由《公共卫生报告》(Public Health Reports)期刊发表的论文的共同作者。美国疾病控制与预防中心(Centers for Disease Control and Prevention)的科学家领导了这项研究。
虽然自闭症的诊断已经开展了至少80年时间,但从未有人对美国儿童中重度自闭症患儿的占比进行统计,此次研究实现了这一领域“零的突破”。直到一年多前,一个由自闭症专家组成的国际委员会才确定了重度自闭症的定义,纳入了智商低于50和/或不具备语言交流能力的标准。
根据这一定义,此次研究发现,在8岁前被诊断患有自闭症的美国儿童中,有约四分之一属于重度自闭。也就是说,美国有超过11万名小学适龄儿童患有重度自闭症。
诊断自闭症时不进行血液或生物测试,而是以儿童的行为模式作为判定标准。传统上,只有在患儿具有严重的语言障碍、社交障碍或异常重复行为时才会被诊断为自闭症。但随着定义内涵的逐渐扩大,一系列相对温和的症状也被纳入了该病症的范畴。
研究人员查阅了2000年至2016年间2万多名具有自闭症相关症状的8岁儿童的学习、医疗记录。
他们发现,重度自闭症患儿所占的比例从2000年的千分之三增长到了2016年的千分之五,轻度自闭症患儿的比例在此期间则是从千分之四增长到了千分之十四。
研究人员发现,轻度自闭症在男孩和白人儿童中更为常见,重度自闭症在女孩中的发病率则较高。
美国疾病控制与预防中心上个月发布的一项研究发现,在美国,黑人和西班牙裔儿童被诊断为自闭症的比例高于白人儿童,而在前几年还是白人儿童出现自闭症的比例更高。专家指出,这种变化可能与筛查、服务得到改善以及社会对自闭症的认识、宣传得到提高有关。据美国疾病控制与预防中心估计,2020年,在8岁儿童中,每36人中就有1人患有自闭症。
此次研究发现,在重度自闭症的占比方面,不同种族之间存在巨大差异。在患有自闭症的黑人儿童中,37%为重度自闭。而在西班牙裔和白人自闭症儿童中,这一数字分别为约三分之一和约五分之一。
该研究的第一作者、供职于美国疾病控制与预防中心的米歇尔·休斯说,要想了解造成上述差异的原因,还需要进行更多研究。
辛格说,这项研究的发布表明,美国疾病控制与预防中心已经认识到,“泛自闭症障碍的诊断标准过于宽泛,(即便同为自闭症患者,在患病程度不同的情况下)其需求大相径庭”。她说,相关数据可以帮助学校和家人更好地理解自闭症患者的需求。
加州大学河滨分校(University of California at Riverside)自闭症研究人员扬·布莱彻认为,这份报告有利有弊。
她说,以智商50作为患儿是否为重度自闭症的判定标准可能并不妥当。她就曾经看到一些智商在70以上的患儿表现出重度自闭症相关症状,比如转圈或重复无意义的话语等。
她说:“判断患儿是否为重度自闭还是要看症状才行。”
她担心那些未达标准的患儿可能得不到与符合相关标准的患儿相同的关注和帮助。
她说:“我们要再接再厉,做好各层面的工作。”(财富中文网)
美联社健康与科学编辑部(Associated Press Health and Science Department)得到了霍华德·休斯医学研究所科学与教育媒体组(Howard Hughes Medical Institute’s Science and Educational Media Group)的支持。美联社对本文所有内容全权负责。
译者:梁宇
审校:夏林
As autism diagnoses become increasingly common, health officials have wondered how many U.S. kids have relatively mild symptoms and how many have more serious symptoms, such as very low IQ and inability to speak.
A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases.
“It’s very important to know how many people have profound autism so that we can properly prepare for their needs,” including more health and education services, said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.
Singer — the mother of a 25-year-old woman with profound autism — was a co-author of the paper, which was published by the journal Public Health Reports. Scientists at the Centers for Disease Control and Prevention led the research.
Though autism has been diagnosed for at least 80 years, the new study is the first to put a number on the share of U.S. children who have the most severe version of it. It comes less than two years after an international commission of autism experts established a definition of profound autism: children with an IQ of 50 or less, and/or kids who can’t communicate through speaking.
Under that definition, about a quarter of U.S. children identified as having autism by age 8 fall into the profound category, the new study found. It means more than 110,000 elementary school-age children in the U.S. have profound autism.
There are no blood or biological tests for autism. It’s identified by making judgments about a child’s behavior. Traditionally, it was diagnosed only in kids with severe language difficulties, social impairments and unusual repetitious behaviors. But the definition gradually expanded, and autism is now shorthand for a group of milder, related conditions, too.
The researchers looked at school and medical records from 2000 to 2016 for more than 20,000 8-year-olds identified as having autism spectrum disorders.
They found that the rate of profound diagnoses grew from about 3 cases per 1,000 children in 2000 to about 5 cases per 1,000 in 2016. But the rate of kids diagnosed with milder forms of autism grew from 4 per 1,000 to 14 per 1,000 over those years.
Milder forms of autism were more common in boys and white kids, the researchers found. Profound autism was more common in girls than boys.
A CDC study published last month found that autism overall is being diagnosed more frequently in Black and Hispanic children than in white kids in the U.S., a change from previous years when white children were more likely to be diagnosed. Experts cite improved screening and services, and increased awareness and advocacy. Among 8-year-olds, 1 in 36 had autism in 2020, the CDC estimates.
The new research found a large racial gap in profound autism. Among Black children with autism, 37% had profound autism. The same was true for about one-third of Hispanic kids with autism and about one-fifth of white children with autism.
More research is needed to understand the reasons for those differences, said the CDC’s Michelle Hughes, the study’s lead author.
Singer said the study’s publication marks a recognition by the CDC that “autism spectrum disorder diagnoses is overly broad and that people who are diagnosed with (it) have very different needs.” The data should help identify schooling and residential needs, she said.
Jan Blacher, an autism researcher at the University of California at Riverside, voiced mixed feelings about the report.
Using an IQ of 50 as a definition of profound autism can be problematic, she said. She has observed children with an IQ above 70 who had the kind of symptoms associated with profound autism, like spinning or a seemingly meaningless repeating of words.
“It’s the symptoms of autism that make a difference,” she said.
She worries that children who don’t make the cut-off might not get the same attention and help as those who do.
“We have work to do at all levels of the continuum,” she said.
The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.