剑桥研究人员发现,每64个儿童就有一个有孤独症
一项对剑桥地区的学龄儿童的研究发现,对应于每三个获得了孤独症诊断的儿童,就有两个尚未被诊断但是也有孤独症的儿童。
据这项研究估计,每一百个五到九岁的儿童中就有一个是孤独症。也就是说,英国大约有五十万孤独症儿童。但是,在对11700名儿童做了详细评估之后,研究人员发现真实的患病率可能高达1比64。
这就意味着英国还有30万尚未获得诊断的孤独症儿童。
这项研究是孤独症研究所的Simon Baron-Cohen教授主持的,并发表在英国精神病学报上。
孤独症是一个谱系障碍,有的患者可能只有轻度的社交问题,而有的可能有更为严重的问题比如不会说话,或鹦鹉学舌,行为刻板,在社交上孤立。
Baron-Cohen教授说:‘不应当以为我们从诊断上看到的就是事情的全貌,掉以轻心是不可取的。但是同样地,我们也不应该过于大惊小怪,主动地去寻找孤独症病例。我们应当等待患者上门求助。患者或他们的家人主动来求助总是比被人推着去做要好得多。’
他还说,未诊断的患者可能处于谱系中程度比较轻的一端,他们可能和家人相处不错,不需要诊断。
Baron-Cohen教授说,对有些家庭来说,孤独症的标签对他们不但没有帮助,反而会增加他们的焦虑,扰乱他们的生活。
研究人员从学校的‘特殊教育需要’(Special Educational Needs, i.e SEN)的登记册入手,对79所学校的8824名孩子进行了调查,发现了83例患孤独症谱系障碍的儿童,据此得出的患病率是1比106。
然后,他们给剑桥郡的11700个儿童的家长发了关于诊断的调查问卷。在3373张收回的问卷中,有41个儿童是已经有孤独症诊断的,相当于1比101的患病率。
最后,他们又向这11700个家长发了‘儿童孤独症筛查测验’(Childhood Autism Screening Test, i.e. CAST),帮助他们识别未诊断的孤独症病例。
所有得分高的孩子和一部分得分中等和偏低的孩子都参加了进一步的评估。
除了已知的41个病例以外,研究组还发现了另外11个符合孤独症的学术诊断标准而没有被诊断的孩子。
这项研究认为,这个发现可能意味着每三例有诊断的情况,就有另外两例没有诊断的情况,诊断和未诊断的比率是3:2。
Baron-Cohen教授说:‘来自两个独立信息源的信息---特殊教育的记录和我们的诊断调查问卷---都证实了孤独症谱系障碍在学龄儿童中的发病率大致是百分之一。这比30年前高了12倍。如果包括尚未诊断的病例,那就是每64个孩子中就有一个孩子在生活的某个时期需要支持和服务。’
孤独症发病率的上升可能要归于家长和医生辨识能力的提高,诊断标准的放宽,和诊断服务更为普遍等因素。
伦敦大学教育学院孤独症教育教授Tony Charman说:‘这项研究证实了最近其他一些研究工作(也包括我们自己的工作)的发现,即孤独症在学龄儿童中的比例是百分之一。它还表明,相当一部分符合孤独症的学术诊断标准的儿童没有被学校或地方教育部门发现。而准确的数字对于提供健康、社会、和教育方面的服务是非常重要的。’
英国全国孤独症协会总管Mark Lever说,‘这项研究很重要。这是我们第一次得到关于尚未得到孤独症诊断但可能需要支持的人数的估计。适时地给这些人以适当的协助极为重要。同时,提供合适的诊断服务也非常关键。’(英文版请看下一页)#p#分页标题#e#
One in every 64 children could have autism, Cambridge researchers find
A study of schoolchildren in Cambridge has found that for every three children who have been diagnosed with autism spectrum disorder there are around two who have the condition but have not been given a formal diagnosis.
It is estimated that around one in 100 children between five-years-old and nine-years-old have autism, meaning there are around 500,000 in the UK. But when researchers carried out more detailed assessments of 11,700 children, they found the true prevalence could be as high as one in 64.
This would mean that there are an additional 300,000 children in Britain with autism spectrum disorder but who have not yet been identified.
The study was led by Professor Simon Baron-Cohen at the Autism Research Centre and is published in the British Journal of Psychiatry.
Autism is a spectrum disorder with cases ranging from relatively mild problems with social interaction to more severe difficulties in behaviour such as not speaking, copying, rigid routines and social isolation.
Prof Baron-Cohen said: "We shouldn't assume that what we are currently diagnosing is the full picture, there is no room for complacency. But equally we shouldn't be alarmist and say we should be going out and actively looking for these cases. We should wait until those people want help. It is always better if the patient or their family is looking for help rather than it being thrust upon them."
He said the undiagnosed cases are likely to be at the mild end of the spectrum, are coping well with their families and may not need a diagnosis.
Prof Baron-Cohen said that for some families the autism label may 'raise anxieties' and be intrusive, rather than helpful.
The researchers used the Special Educational Needs (SEN) registers in schools, covering 8,824 children attending 79 schools and found 83 cases of autism-spectrum conditions giving a prevalence of one in 106 children.
Then they sent a diagnosis survey to the parents of 11,700 children in Cambridgeshire. From the 3,373 completed surveys, 41 cases were reported corresponding to a prevalence of one in 101.
Finally, the team sent the Childhood Autism Screening Test (CAST) to parents of the same 11,700 children to help identify any undiagnosed cases of autism-spectrum conditions.
All children who scored highly, along with a selection of medium and low scorers, were called in for further assessment.
Excluding the 41 cases already known about, the team found an additional 11 children who met research diagnostic criteria for an autism spectrum condition but had not yet been diagnosed.
The research said this could mean that for every three cases of autism spectrum that are diagnosed, there may be another two that are undiagnosed, giving a ratio of known to unknown cases of 3:2.
Prof Baron-Cohen said: "The two independent sources of information – the SEN register and diagnosis survey – provide converging evidence on the prevalence of autism spectrum conditions as being around one per cent of primary school-age children. This is about 12 times higher than 30 years ago; including the previously undiagnosed cases, this means that one in 64 children may at some point in their lives require support and services."
The increase in the prevalence of autism is probably due to better recognition of the condition by both parents and doctors, wider diagnostic criteria and more diagnostic services.
Prof Tony Charman, chairman in Autism Education, Institute of Education, London, said: "This study confirms findings from other recent work, including our own, that around on per cent of school age children have an autism spectrum disorder. The study also shows that in a significant proportion of cases children meeting research criteria for an autism spectrum disorder were unrecognised by schools and local health services. Accurate figures for the prevalence of autism spectrum disorders are important for planning health, social and education services."
Mark Lever, Chief Executive of the National Autistic Society, said: "This is important research, which for the first time gives us an estimate of the number of people who don't have an autism diagnosis but may be in need of support. Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial."