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黎巴嫩战争如何让患有自闭症和注意力缺陷多动障碍的年轻人付出代价How war in Lebanon has cost young people with autism and ADHD

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27岁的安东尼是AAA联合创始人加达·海耶克·马库尔(Ghada Hayek Makhoul)的儿子,他患有自闭症且无法说话。在黎巴嫩的一所专为自闭症儿童设立的学校里,他在老师的帮助下挑选着彩色铅笔。[亚历克斯·米兰·杜里/半岛电视台(Alex Milan Durie/Al Jazeera)]Anthony, the 27-year-old non-verbal autistic son of AAA cofounder Ghada Hayek Makhoul, chooses colouring pencils with a teacher at the school for young autistic people in Lebanon [Alex Milan Durie/Al Jazeera]

贝鲁特,黎巴嫩 —— 丈夫于2020年死于新冠肺炎后,莱娜·库尤姆吉安搬回位于马兹拉特·亚舒村父母家中,该村距贝鲁特车程约20分钟。对于精力充沛、性格外向的莱娜来说,这次搬迁颇为艰难,但她接受了现实,意识到自己需要帮助来照顾20岁的女儿瓦娜,后者患有自闭症且不说话。

Beirut, Lebanon – After her husband died from COVID-19 in 2020, Lena Kouyoumjian moved back to her parents’ house in Mazraat Yachouh, a village 20 minutes’ drive from Beirut. For Lena, energetic and outgoing, the move was difficult, but she accepted that she needed help to care for her 20-year-old daughter, Vana, who is autistic and non-verbal.

莱娜在女儿两岁时首次察觉到其症状。瓦娜至今仍无法用语言表达感受,但母亲竭力去理解她。

Lena first noticed her daughter’s symptoms when she was two years old. Vana is still unable to communicate verbally how she feels, but her mother does her best to understand her.

与许多自闭症人士——以及神经多样性人群总体情况一样——瓦娜需要一个支持性且稳定的环境,以及有规律的日常作息,才能保持良好状态。

Like many autistic individuals – and neurodivergent people in general – Vana needs a supportive and stable environment, alongside a structured routine, to feel well.

自2023年10月以来,黎巴嫩陷入战火,全国多地遭受轰炸,经济危机持续冲击所有黎巴嫩人,神经多样性人群受影响尤甚。

Lebanon has been engulfed in war since October 2023, with bombings across the country and an economic crisis continuing to impact all Lebanese, particularly neurodivergent people.

3月,以色列升级对黎巴嫩南部的袭击。作为残障儿童训练师,莱娜意识到这可能会影响患有自闭症的女儿。

When Israel escalated its attacks on southern Lebanon in March, as a trainer for children with disabilities, Lena understood that this could impact her autistic daughter.

“日常作息的任何突然变化、巨大噪音、恐惧或不确定性,都会增加他们的焦虑,让他们感到不安全,”莱娜告诉半岛电视台。

“Any sudden change in routine, loud noises, fear, or uncertainty can increase their anxiety and make them feel unsafe,” Lena told Al Jazeera.

“我在女儿身上看到了这一点。自从局势变得更加困难以来,她变得更加焦虑,对周围发生的变化更加敏感。” 自闭症和注意力缺陷/多动障碍(ADHD)的症状因人和病情而异,但常包括感觉问题和情绪调节困难。ADHD和自闭症常共病,形成AuDHD(自闭症合并注意力缺陷/多动障碍),两种病症的特征均会表现出来。

“I can see this in my daughter. Since the situation became more difficult, she has become more anxious and sensitive to the changes happening around her.”The symptoms of autism and attention-deficit/hyperactivity disorder (ADHD) vary depending on the person and condition, but they frequently include sensory issues and emotional dysregulation. ADHD and autism often occur together, combining to make AuDHD, where traits from both conditions can be seen.

患有这些神经发育障碍的人常遭受社会污名化,因为社会未能充分理解他们,黎巴嫩也不例外。

People with these neurodevelopmental conditions are often stigmatised by societies that do not fully understand them, including in Lebanon.

20岁的莉娜·库尤米安(Lena Kouyoumjian)与她患有自闭症的女儿瓦娜(Vana)合影。由于以色列在黎巴嫩的战争,瓦娜的症状有所恶化;莉娜非常害怕噪音或任何突然的生活变化。[莉娜·库尤米安提供]Lena Kouyoumjian poses for a selfie with her non-verbal autistic daugher Vana, whose symptoms have worsened due to Israel’s war in Lebanon, as the 20-year-old fears loud noises or “any sudden change in routine” [Courtesy of Lena Kouyoumjian]

以色列对黎巴嫩的战争以及大规模流离失所造成的压力,已导致许多人出现心理问题,但由于神经多样性人群需要持续的支持和固定的生活惯例,他们更为脆弱。

While the pressures caused by Israel’s war on Lebanon and mass displacement have led to psychological issues for many, neurodivergent people are more vulnerable due to their need for consistent support and routine.

“作为一名自闭症孩子的家长,并非每位家长都能应对。我常面临的一个挑战是,决定该分配多少时间和精力给孩子,”蕾娜说。

“Being a parent of an autistic child isn’t something every parent can handle. A challenge I often face is deciding the amount of time and energy I should allocate to my child,” said Lena.

黎巴嫩自闭症关注协会(AAA)为母女俩提供了支持。过去六年里,瓦娜一直在该协会上课,该非营利组织位于贝鲁特郊外的安泰利亚斯,为年轻自闭症人士提供替代性学校教育。

Lebanon’s Autism Awareness Association (AAA) has provided support for both mother and child. Vana has attended classes at AAA, a nonprofit based in Antelias, outside Beirut, for the past six years, which serves as an alternative school for young autistic people.

但战争期间黎巴嫩物价上涨,导致瓦娜无法定期上课。“甚至送她去中心的交通都变得非常困难,尤其是随着经济挑战的加剧。有时她根本去不了,只能待在家里,”蕾娜说。

But rising costs in Lebanon during the war have prevented Vana from attending classes regularly. “Even transportation to her centre became very difficult, especially with the increasing financial challenges. At times, it became impossible for her to go, so she had to stay home,” Lena said.

加达·哈耶克·马库勒于2015年与其他自闭症儿童家长共同创立了该协会,她表示,协会一直在努力提高黎巴嫩社会对自闭症的认知。

Ghada Hayek Makhoul, who co-founded AAA with other parents of autistic children in 2015, said the group has made constant efforts to increase awareness about the condition in Lebanon.

“许多人不了解自闭症到底是什么。他们不了解谱系;不知道它可以从轻度、中度变化到重度,”加达告诉半岛电视台。

“Many people don’t know what autism really is. They don’t know the spectrum; how it can vary from mild to moderate to severe,” Ghada told Al Jazeera.

感官过载 加达的儿子安东尼是一位沉稳的27岁自闭症非语言男性,严重依赖照护者。虽然他无法说话,但母亲表示,当他因感官不适感到痛苦、双手捂住耳朵时,显然是处于痛苦之中。

Sensory overload Ghada’s son, Anthony, is a calm 27-year-old autistic, non-verbal man who relies heavily on helpers. Although he is unable to speak, his mother said it is clear when he is distressed, putting his hands over his ears when he is in pain due to sensory discomfort.

自闭症人士对噪音的敏感度可能高于神经典型人士。战争期间,黎巴嫩民众经历了令人痛苦的各种声音,从以色列炸弹落地爆炸的巨响,到战机掠过头顶产生的音爆。

Autistic people can be more sensitive to noises than neurotypical people. During the war, people in Lebanon have been subjected to a harrowing range of sounds, from Israeli bombs exploding on the ground to the sonic booms of warplanes flying overhead.

在安东尼投篮得分后,学校的老师与他击掌庆祝。[亚历克斯·米兰·杜里/半岛电视台(Alex Milan Durie/Al Jazeera)]A teacher for young autistic people high-fives Anthony at the AAA after he scores a basket [Alex Milan Durie/Al Jazeera]

“试想一下,无人机一直在上空盘旋[对自闭症患者而言],炸弹,炸弹爆炸的震动……我们听到的这一切,当然对他影响很大,”加达说。

“So, imagine the drones all the time [for autistic people], the bombs, and the vibration of the bombs … all of this that we were hearing, so of course it affected him a lot,” Ghada said.

“我儿子现在受不了看电视新闻。他会关掉电视,把遥控器拿走。这对他刺激太大了。”安东尼的母亲说,即使他对所说或所发生之事的理解有限,他也能感知到紧张和焦虑。

“My son can’t listen to the TV any more due to the news. He switches it off and removes the remote control. It’s too triggering for him.”Anthony’s mother said he senses tension and anxiety, even if his understanding of what is being said or happening is limited.

“[影响]所有感官,方方面面。他不想再进游泳池了。他以前很喜欢水。现在,他不想再进游泳池了,”加达说。

“[It affects] all the senses, everything. He doesn’t want to go into a pool any more. He used to love the water. And now, he doesn’t want to go into the pool any more,” Ghada said.

“我不知道是什么变了。是因为在户外?是因为声音?我不知道。” 心理健康支持成为奢侈品 以色列对黎巴嫩的战争直接冲击了AAA及其他为神经多样性人群或提供心理支持的组织。

“I don’t know what changed. Because it’s outside? Because of the sound? I don’t know.”Mental health support as a luxury Israel’s war on Lebanon has had a direct economic impact on the AAA and other organisations providing neurodivergent or psychological support.

黎巴嫩的经济危机,今年通胀率可能达到17%,也导致了能够支持神经多样性人群的专业人才外流。

Lebanon’s economic crisis, with inflation potentially reaching 17 percent this year, has also led to a brain drain of professionals who could support neurodivergent people.

一名自闭症女孩正在练习法语写作,学校的老师握着她的手给予她帮助。[亚历克斯·米兰·杜里/半岛电视台(Alex Milan Durie/Al Jazeera)A non-verbal autistic girl practices her writing in French as a teacher at the AAA holds her hands to support her [Alex Milan Durie/Al Jazeera]

AAA是自闭症儿童家庭的重要支持基地。但这需要高昂费用:孩子每周上五天课,每月700美元。在80%人口生活在贫困线以下的情况下,鲜有家庭负担得起此类服务。

AAA is a crucial support base for families with autistic children. But it comes at a significant cost of $700 per month for children attending five days a week. With 80 percent of the population living in poverty, few can afford such services.

“我们需要更多受过培训的员工,也需要留住正在离开国家的员工。所以我们需要提供更好的薪水,但我们负担不起,因为那会增加家长的负担,”加达说。“战争期间,对所有人来说情况都处于危机模式。” 其他心理健康服务也面临同样的情况。虽然许多非政府组织(NGO)提供免费治疗,但私人咨询一次50分钟的疗程可能超过100美元。

“We need more trained staff, and we also need to keep the staff that are leaving the country. So, we need to have better salaries, but we cannot afford it, because we will have to increase the load on the parents,” said Ghada. “Things are in crisis mode for everybody during the war.”The same thing is being seen with other mental health services. While many nongovernmental organisations (NGOs) provide free therapy, private consultations can cost more than $100 for a single 50-minute session.

Enmaeya 是一个专注于可持续发展的媒体平台,该平台的公共卫生研究员努尔·图坎对半岛电视台表示,对自闭症患者甚至注意力缺陷多动障碍(ADHD)患者的照护“很大程度上是一项自费开支”。虽然政府在 2023 年启动了国家残疾津贴,资金来自欧盟和联合国儿童基金会(UNICEF),但每月 40 美元的津贴在黎巴嫩甚至不足以支付基本开销。自闭症患者可以申请由社会事务部颁发的个人残疾卡,从而有资格获得支持,但 ADHD 患者则不能。

Nour Toukan, a public health researcher at Enmaeya, a media platform focused on sustainable development, told Al Jazeera that care for people with autism or even for ADHD is “very much an out-of-pocket expense.”While the government did launch a National Disability Allowance in 2023, with funding from the European Union and the United Nations Children’s Fund (UNICEF), the allowance of $40 per month is not enough to cover even the basics in Lebanon. People with autism can get a personal disability card, issued by the Ministry of Social Affairs, making them eligible for support, but those with ADHD cannot.

黎巴嫩国家心理健康计划由公共卫生部于 2014 年设立,正试图弥补因经济和地理因素造成的支持缺口。

Lebanon’s National Mental Health Programme, established in 2014 by the Ministry of Public Health, is trying to bridge gaps in support caused by economic and geographic variables.

该计划的创始人兼主任拉比赫·埃尔·沙迈博士对半岛电视台表示,针对儿童和青少年的国家心理健康战略正在最后敲定阶段。

Dr Rabih El Chammay, the founder and director of the programme, told Al Jazeera a national mental health strategy for children and teenagers is being finalised.

拉比赫博士说:“针对自闭症和 ADHD 的国家研究也已开展,为这项工作提供了证据支持。我们正在与多家组织会面,特别是代表自闭症患者家庭的组织,以了解优先事项并为进一步的协调行动积累动力。战争让这项工作更加困难,因为它可能增加支持需求,同时破坏人们赖以生存的服务。” 发育倒退 流离失所者受影响最严重,但所有在黎巴嫩因学校教育和日常生活被打乱的人都受到了影响。

“National studies addressing autism and ADHD have also been conducted, providing evidence to inform this work. We are meeting with several organisations, particularly organisations representing families of persons with autism, to understand priorities and build momentum for further coordinated action,” Dr Rabih said. “War makes this work more difficult because it can increase support needs while disrupting the services people depend on.”Developmental regression Displaced people have been the most impacted, but all of those in Lebanon whose schooling and routines have been disrupted are affected.

黎巴嫩可持续发展媒体平台Enmaeya的公共卫生研究员努尔·图坎(Nour Toukan)告诉半岛电视台:“目前,自闭症或注意力缺陷多动障碍(ADHD)的诊疗费用完全需要患者自付。”[亚历克斯·米兰·杜里/半岛电视台(Alex Milan Durie/Al Jazeera)Nour Toukan, a public health researcher at Enmaeya, a Lebanese media platform focused on sustainable development, told Al Jazeera that “at the moment, care for autism or even for ADHD is very much an out-of-pocket expense” [Alex Milan Durie/Al Jazeera]

23 岁的阿德汉·法拉杰是贝鲁特黎巴嫩美国大学的心理学学生,2024 年被诊断患有 ADHD。他说,因战争课程改为线上后,他发现自己越来越多地待在家里。

Adham Faraj, a 23-year-old psychology student at the Lebanese American University in Beirut, who was diagnosed with ADHD in 2024, said that when his classes moved online due to the war, he found himself staying at home more and more.

阿德汉说:“参与感降低了,尤其是对注意力不集中的人来说。你外出的动力变小了,所以就躺在床上上课。”

“It’s less engaging, especially if you struggle with attention. You’re less motivated to go out, so you just attend classes from bed,” Adham said.

Adham说,黎巴嫩以色列空袭的强度让他感到不安,同时还担心药品价格上涨。

Adham said the intensity of Israeli air strikes in Lebanon unsettled him, along with concerns about the rising price of medicine.

“总有更便宜的替代品,但这取决于人的社会阶层。也许11美元一盒的药对某些人来说负担得起,但并非对所有人都负担得起,”他说。

“There’s always a cheaper alternative, but it depends on people’s social class. Maybe an $11 box of medication is affordable for some, but not for everyone,” he said.

贝鲁特心理学家兼心理治疗师里姆·阿朱尔(Rim Ajjour)的工作重点是自闭症青年,她发现许多神经多样性人士在战前学到的技能现在正在流失。

Rim Ajjour, a psychologist and psychotherapist in Beirut, whose work focuses on young people with autism, has seen that many of the skills neurodivergent people learned before the war are now being lost.

“由于黎巴嫩资源有限,且人们的优先事项发生了转变,治疗的可及性进一步降低,”她说。

“With the limited resources available in Lebanon and the shift in people’s priorities, there has been more limited access to therapy,” she said.

里姆说,她的诊所和其他诊所正竭尽全力保持治疗的可及性,冻结咨询费用,即使它们自身的开支在增加。

Rim said that her clinic and others are doing their utmost to keep therapy accessible by freezing consultation fees, even when their own expenses are increasing.

随着以色列对黎巴嫩南部的攻击持续,该地区仍被以色列军队占领,违反了美国斡旋的六月停火协议,许多人担心如果全面战争重启,其工作将受到影响。“我不知道我们还能否再次承受,”里姆说。

With Israeli attacks continuing in southern Lebanon, which remains occupied by Israeli forces, in violation of a US-brokered June ceasefire, many fear the impact on their work in case of a return to full-scale war. “I don’t know how we’ll be able to take it again,” Rim said.

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