ADHD:女孩患者为何经常被忽视?

Why is ADHD missed in girls?
ADHD:女孩患者为何经常被忽视?

Emily Johnson-Ferguson’s mind has been racing for as long as she can remember. The eating disorders she began suffering from as a teenager were her attempt to slow down her brain. Doctors tried to blame them on family problems and stress, but she knew that wasn’t it.

自懂事以来,艾米莉·约翰逊-弗格森(Emily Johnson-Ferguson)的精神就过度活跃。她十几岁起就患有进食障碍症,这是她试图让自己大脑慢下来的方法。医生认为这是家庭问题和压力造成的,但她知道事实并非如此。

It was only last year, aged 42, that she finally got to the root of her problems: ADHD.

她直到去年42岁时才被确诊患有注意力缺陷多动症(ADHD),终於找到困扰她一生的根源。

Johnson-Ferguson is not alone. Though the stereotypical image of ADHD is a boy bouncing around a classroom, that’s not the whole picture. Girls can have ADHD, too – and many go without diagnosis, and without treatment that could change their lives.

约翰逊-弗格森并不是个例。虽然人们对注意力缺陷多动症的刻板印象是在教室里上蹿下跳的男孩,但这并不是事情的全貌。女孩也可能患有注意力缺陷多动症,而且许多女孩并未得到确诊,也未得到原本可以改变她们人生的治疗。

ADHD is a neurodevelopmental disorder that comes in three types: inattentive, hyperactive/impulsive, or a combination of both. People with inattention may forget things, struggle to get organised, and find themselves easily distracted. Those with hyperactivity and impulsivity might struggle to stay sitting down, constantly fidget, and interrupt conversations.

注意力缺陷多动症是一种神经发育失调症,分为三种类型:注意力缺陷型、过动/冲动控制障碍型、前两者症状皆有的混合型。注意力缺陷型的人可能记忆力不好,很难做事有条有理,而且注意力很容易分散。过动/冲动控制障碍型患者可能很难保持坐姿,经常坐立不安,并且爱打断与人的对话。

The condition is usually first diagnosed in childhood, but most people don’t grow out of it. For those whose symptoms are missed as children, living with undiagnosed ADHD as they move into adulthood causes problems.

这一症状通常在童年时期首次确诊,不过大多数人长大成人后就自然痊愈。对于那些童年时期漏诊的患者,由于未获得确诊而治疗,可能会在成年后造成问题。

“When I was left to my own devices at university I just couldn't concentrate at all,” says Johnson-Ferguson. She switched courses, but it didn’t help. Her bulimia persisted throughout university, and for the next 20 years she also used alcohol, caffeine, and sugary drinks to self-medicate – common among adults with ADHD.

艾米莉说:“当我上大学可以自主做决定时,我根本无法集中精力读书。”她换了课程也无济于事。她在整个大学期间都患有厌食症,并在接下来的20年使用酒精、咖啡因和含糖饮料进行自我治疗。这种行为在患有注意力缺陷多动症的成年人中很常见。

As her marriage broke down, she started to find life even more difficult. In an effort to start afresh, Johnson-Ferguson gave up her bad habits, but found no respite from her symptoms; instead, they got worse. At her lowest point she was spending days on end in bed. “At that time I couldn’t focus on anything,” she says.

她婚姻破裂后,觉得日子越发难过。她放弃了那些坏习惯,试着重新开始,但也无法缓解;相反,症状变得更为严重。她在最低谷的那几天一直躺在床上。“当时我没有办法集中精力做任何事。”她说道。

Attention deficit

注意力缺失

There is a concrete difference between the prevalence of ADHD in boys versus girls. In one study of 2,332 twins and siblings, Anne Arnett, a clinical child psychologist at the University of Washington, found that a sex difference in diagnosis could be explained by differences in symptom severity: boys tended to have more extreme symptoms, and a broader distribution of symptoms, than girls.

男孩和女孩的注意力缺陷多动症患病率存在显著差异。在一项针对2332个双胞胎和兄弟姐妹的研究中,华盛顿大学的临床儿童心理学家阿奈特(Anne Arnett)发现,不同性别的确诊率不同可以用症状严重程度的不同来解释:与女孩相比,男孩子们的症状通常更多样、更极端。

“It's an actual neurobiological difference that we're seeing,” says Arnett. It’s not clear why that’s the case, but it could be that girls have a protective effect at the genetic level, she says.

阿奈特表示:“我们看到的其实是一种神经生物学差异。”出现这种情况的原因尚不明确,但有可能是因为从基因层面看,女孩更能保护自己。

But the true size of the difference is unclear.

不过人们仍然不清楚区别到底有多大。

When it comes to real-world diagnoses, boys far outweigh girls. In studies that look at who meets ADHD criteria in the population as a whole, however, the ratio still favours boys, but less so. Depending on which research you look at, the ratio of boys to girls with ADHD could be anywhere between 2:1 and 10:1.

就真实世界诊断而言,男孩确诊率确实远远高于女孩。即便是在研究总体人口中哪些人符合注意力缺陷多动症的评定标准.结果发现男孩的比例也比女孩高,但差距没有那么明显。不同的研究中,男孩和女孩患注意力缺陷多动症的比例也不同,在2:1至10:1之间。

“It would seem to suggest that there's actually a lot more females who are affected by ADHD,” says Florence Mowlem, an associate at healthcare consultancy Aquarius Population Health. “Yet, for some reason that we don’t quite understand, they don't seem to be getting the clinical diagnosis as often as males.”

医疗健康咨询公司《水瓶座人口健康》(Aquarius Population Health)的咨询师莫伦姆(Florence Mowlem)表示:“这似乎显示,实际上有患有注意力缺陷多动症的女性比已知的多。然而出于某些我们并不太了解的原因,她们很多却似乎无法像男性那样得到临床确诊。”

Research suggests that girls need to have more severe, and more visible, symptoms than boys before their ADHD will be recognised. In one study of 283 children aged between 7 and 12 years old, Mowlem and colleagues looked at what differentiated both boys and girls who met the diagnostic criteria for ADHD from those who had a lot of ADHD symptoms, but not enough to be diagnosed.

研究显示,患有注意力缺陷多动症的女孩只有症状比男孩更严重更明显才能获得确诊。在一项对283名年龄7至12岁儿童的研究中,莫伦姆和同事对比了那些达到注意力缺陷多动症诊断标准的男孩女孩和那些有許多症状、却不足以确诊的男孩女孩之间的区别。

Mowlem, who was PhD candidate at King’s College London at the time, found that parents, in their own ratings, seemed to play down girls’ hyperactive and impulsive symptoms, while playing up those of boys. They also found that girls who did meet the criteria tended to have more emotional or behavioural problems than girls who didn’t. This was not the case for boys.

莫伦姆当时还是伦敦国王学院(King's College London)的在读博士生。她发现家长在自行评估时往往会淡化女孩的过度活跃和冲动症状,相反却过于突出男孩的这些症状。她们还发现,那些符合诊断标准的女孩通常比其它女孩更情绪化、有更多行为问题。但男孩并不会如此。

In a similar study of 19,804 Swedish twins published last year, Mowlem and her colleagues found that girls, but not boys, were more likely to be diagnosed if they suffered from hyperactivity, impulsivity, and behavioural problems.

在一篇去年发布的针对19804名瑞典双胞胎的类似研究中,莫伦姆和她的同事发现,女孩如果表现出过度活跃、冲动以及行为问题,較可能得到确诊,但男孩则并非如此。

Girls could also be better at compensating for their ADHD symptoms than boys, similar to how girls with autism mask their symptoms.

女孩也可能比男孩能更好地掩饰自己的症状,这和自闭症女孩掩饰自己的症状类似。

“Girls are far less likely to bounce around the classroom, fighting with the teachers and their colleagues,” says Helen Read, a consultant psychiatrist and ADHD lead for a large London NHS Trust. “A girl who did that would be so criticised by peers and other people that it is just far harder for girls to behave in that way.”

心理咨询师、伦敦大型国民信托基金(NHS Trust)注意力缺陷多动症带头人瑞德(Helen Read)表示:“女孩不太会在教室里上蹿下跳,或者和老师们争吵打闹。一个女孩要是这么做,会被同龄人和其他人批评,因此女孩几乎不会以这种方式行事。”

Even when they are hyperactive, girls are more likely to be over-talkative, or rebellious – a bit of a wild child, she says. That might not be recognised by parents or teachers as being caused by ADHD, especially as we expect girls to be more sociable than boys anyway.

她说,女孩子即便是过度活跃,也更可能表现为过于健谈或比较叛逆,有点野孩子的味道。老师和家长并不会认为这些症状是注意力缺陷多动症造成的,尤其是我们对女孩的预设就是她们会比男孩更擅长社交。

But more research is needed before we’ll know how big a problem this is.

但需要更多的研究,我们才能了解这个问题到底有多严重。

Symptom similarity

症状相似度

If girls are losing out because they have less stereotypical symptoms, they might not be the only ones: boys with purely inattentive ADHD are probably being missed, too.

如果说女孩们被漏诊是因为她们的症状不够典型,那么男孩也可能如此:注意力缺陷型的患病男孩也可能被人忽视。

It’s a commonly held belief that girls are more likely to be inattentive than boys. But that’s a myth, says Elizabeth Owens, assistant clinical professor in the department of psychology at the University of California, Berkeley. She says the current best evidence shows that rates of inattention are the same for boys and girls.

人们普遍认为,女孩比男孩更容易注意力不集中。但加州大学伯克利分校心理学院的助力临床教授欧文(Elizabeth Owens)表示,这只是传闻而已。她表示,目前最好的证据表明,男孩和女孩的注意力不集中比例是一样的。

“The inattentive presentation is actually more common [among both boys and girls], but it tends to be under-recognised or under-diagnosed, because the kids aren't typically causing problems in the classroom,” she adds.

她还补充说:“这种注意力缺陷型的表征其实[在男孩和女孩中都]都比已确诊的要多,但通常会被忽略或漏诊,因为这些小孩通常并不会在课堂上惹麻烦。”

In fact, girls and boys with ADHD are much more similar than they are different, says Owens. “It underscores the fact that ADHD and girls is serious. For a long, long time, it was discounted, or overlooked.”

事实上,患有注意力缺陷多动症的男孩和女孩的相似点比不同点要多得多,欧文说道。“这就强调了一个事实,人们应该认真对待注意力缺陷多动症以及患病的女孩。很长时间以来,人们都淡化、忽视了这件事。”

One difference, though, is that girls with combined ADHD – who have both inattentive and hyperactive symptoms – are at higher risk of self-destructive actions as they enter adulthood. Girls with ADHD are also more likely to develop anxiety and depression later in life.

但其中一个区别在于,患有混合型注意力缺陷多动症的女孩,即注意力缺陷型和过动/冲动控制障碍型两种症状都有,在成年后进行自残行为的风险更高。患有注意力缺陷多动症的女孩还更有可能在往后的生活中患上焦虑症和抑郁症。

As part of a study that started in the 90s, Owens and her colleagues followed 228 girls, 140 of whom had ADHD, over two decades. At the second and third follow ups, when participants were on average aged 19 and 25 respectively, they found that girls who’d been diagnosed with combined ADHD in childhood were at higher risk of self-harm and attempting suicide.

欧文自上个世纪90年代起就开始了一项研究,追踪了228名女孩20多年的生活,这其中有140人患有注意力缺陷多动症。在第二、第三次随访时,参与研究的女孩平均年龄分别为19和25岁。她们发现,那些童年时期确诊患有混合型注意力缺陷多动症的女孩有更高的自残和自杀风险。

In theory, recognising and treating ADHD early should help to mitigate this risk – although Owens says that, as yet, there’s no evidence to show this works. “ADHD is a chronic condition,” she says. “It's not something you can treat and it'll go away.”

理论上,能尽早确诊并治疗注意力缺陷多动症有助于缓解这一风险,但欧文表示,目前还没有证据显示这是有效的。她说:“注意力缺陷多动症是慢性病,不是治疗后就能立竿见影痊愈。”

Treatment for ADHD can, however, make a huge difference day-to-day.

不过,注意力缺陷多动症的治疗可能让患者的日常生活发生巨大变化。

Shortly after Johnson-Ferguson was finally diagnosed, she started taking medication, a stimulant commonly used to treat ADHD called lisdexamfetamine. “The next day I just sat down and watched a whole EastEnders,” she says. “It was like walking in slow motion for three days.”

艾米莉·约翰逊-弗格森最终确诊后不久,便开始服用名为利右苯丙胺(lisdexamfetamine)的药物。这是一种用于治疗注意力缺陷多动症的中枢兴奋剂。她表示:“第二天我就坐着看了一天的《东区人》(East Enders)。感觉就像用慢镜头的速度过了三天。”

She has to work hard to ensure she reaps the benefits of the drugs – exercising, eating healthily, drinking less, and forgoing caffeine – but the changes have been worth it. “The planning that I can do at work now is incredible, it’s like I’m a different person,” she says.

她必须非常努力才能确保自己尽可能达到最大的药效,她要锻炼、饮食健康、减少酒精摄入、戒断咖啡因,但这些改变都很值得。她说:“我现在工作时做的规划简直好得令人难以置信,感觉就像变了一个人。”

Beyond medication, knowing that the problems you’ve been facing throughout your life are not your fault can also be a huge weight lifted. Johnson-Ferguson describes her life pre-diagnosis as “42 years of feeling completely different to everybody on the planet”.

除了服药之外,了解到这些一辈子要面对的问题并不是自己的错也能让人减轻不少压力。艾米莉·约翰逊-弗格森把自己被确诊前的人生描述为“感觉自己和地球上每一个人都完全不同,是异类一样的42年”。

Now, she’s able to channel the positive aspects of her ADHD – hyper-focusing on short term projects – into a successful career in theatre marketing, while better understanding her shortfalls.

现在,她能够把注意力缺陷多动症的优势,即对短期项目保持极高的专注度,运用在打造成功的电影市场营销的职业生涯上,同时也更好地了解自己的弱项。

But many are not so lucky. Until we let go of the stereotypical image of what ADHD looks like and get to the bottom of why girls with the condition are being missed, plenty of women will end up living with symptoms that have drastic effects on their lives, without knowing they could get help.

但还有很多人并没有那么幸运。除非我们完全摒弃对注意力缺陷多动症的刻板印象,并找到患有此症的女孩何以被忽视的根本原因,许许多多的女性仍然会一辈子与这些症状为伴,一生受到严重影响,而且不知道自己本可以寻求帮助而获得新生。

来源:纽约时报

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