全球7000万人患自闭症!穿过孤独,与每个TA相拥

2021-04-03 甘甜 中国新闻网

他们,看得见却很少主动与他人对视,听得见却不爱与外界接触。犹如天上明星,一人一世界。他们,是来自“星星的孩子”。

他们,看得见却很少主动与他人对视,听得见却不爱与外界接触。犹如天上明星,一人一世界。他们,是来自“星星的孩子”。

4月2日,是“世界自闭症日”。据联合国估计,目前,全球已有逾7000万人患有自闭症。而在新冠疫情蔓延之时,本就存在社交沟通等多方面障碍的他们,正身处更为严峻的社会环境当中。

让我们再次为自闭症患者所面临的困境发声,为他们创造一个更包容的社会。穿过孤独,与每一个“TA”温柔相拥。

孤独:谁会擦亮那扇“窗”?

伊拉克小男孩萨米尔总爱趴在自家阳台的栏杆上,一待就是几个小时。这是他了解外界“唯一的窗口”。

自小患有自闭症的他,会朝着路过的车辆招手,看着别的孩子玩耍,却很少走出去与他们交流。他的母亲说,“我希望他可以像其他孩子一样去正常的学校上学……我也希望他可以和我说话。我想听到他的声音,听他喊我‘妈妈’。”

自闭症又称孤独症,是一种从幼儿期开始显现的终身神经系统疾病。多发生在3岁以前,核心障碍为社会交往沟通障碍、兴趣狭窄和刻板重复的行为方式。

联合国数据显示,截至目前,全球大概有超7000万人正遭受自闭症的困扰。约合每160名儿童中,就有1人患病。中国则有1300万自闭症患者,其中14岁以下的儿童,超过300万人。

自闭症的成因,至今仍属未知。据世界卫生组织,现有科学证据显示,许多因素都可能使部分儿童患泛自闭症障碍,包括环境因素和遗传因素。

沉默、疏离、与世隔绝……这些字眼,为孩子们打上了特殊的“标签”。可他们其实只是来自“星星的孩子”,也渴望爱与被爱。

在自闭症患者本杰明拍摄的一部记录短片中,他总爱问其他人,“我能给你打电话吗?” 而所有受访者都笑着回应:“当然!”

听到答案后,本杰明总是忍不住开心微笑。他说,这个短片讲述的是他和健全人相处的故事。但谁又能否认,每一次“当然!”,不也是世界对他发出的温暖邀请呢?

无助:新冠疫情加剧困境

残酷的现实是,长期以来,很多自闭症患者在教育、医疗等方面,遭受着不平等待遇。新冠疫情,更是进一步加剧了这种不平等现象。

当下,在加拿大新斯科舍省,一些父母就在担心,疫情将对自己患有自闭症的孩子产生“毁灭性”的影响。

因为这些孩子们本该在正式入学前,接受为期一年的早期强化行为干预计划治疗。但受疫情冲击,服务机构先是被迫暂停数月,重启后又因资金问题,大幅缩短了学习时长、减少了训练项目。

孩子们能否适应学校的生活?如何才能帮助他们多交朋友,不被他人歧视和欺负?他们,会不会永远都不会倾诉出自己的内心想法?无助的情绪,压在父母心头。

《华尔街日报》的一项调查还显示,新冠疫情下,由于缺少相关医疗专业人士,针对患有自闭症等智力发展障碍的患者的诊断和治疗,尤为困难。此外,由于部分患者本身患有基础疾病,其新冠死亡率,也比普通人高很多。

“疫情及其对社会的影响,使自闭症患者面临巨大风险。”联合国秘书长古特雷斯此前专门指出。而部分国家和地区社会支持系统的“崩溃”,使自闭症患者在行使自身权利时,面临更大障碍。

希望:探寻挑战和机遇

自闭症患者面临的难题,不止于此。由于核心障碍伴随一生,很多人长大成年,步入社会后,依然可能“寸步难行”。

美国一位母亲亚历山德拉介绍说,自己患有自闭症的儿子,聪明又肯干活,但他的感官较常人更敏感,社交方式也特别。“这意味着,传统工作环境对他来说,处处都是困难。”

与他人的持续交谈,可能让他感到焦虑,工作环境中的噪音和荧光灯,也都可能造成他的负担。

如何才能帮助自闭症患者更好地融入社会生活呢?为此,联合国将在2021年4月8日举行主题为《工作场所的包容性:后疫情世界的挑战与机遇》的线上活动,与自闭症谱系障碍患者展开小组讨论。

联合国指出,疫情下,新的工作方式,包括远程工作和使用新技术,为自闭症患者创造了机会。比如,通过社交软件在家办公,他们的社交压力可以得到大幅缓解。

携手:不会放弃每一个“TA”

尽管目前,自闭症仍无已知的治愈方法,但我们,应该更深入、系统地了解这种疾病,更不会放弃每一个需要帮助的“TA”!

——多早能够发现儿童患泛自闭症障碍?

在一岁前发现很困难,但一般到两岁时就可以确诊。

发病的特征包括,语言和社交技能发育推迟或暂时倒退,出现重复性刻板行为模式。

——如何帮助自闭症患者?

父母可帮助确保患儿获得卫生服务和教育,并提供关怀和鼓励的环境。

社会应向患儿及其家庭提供相关信息、服务、转诊和符合其各自需求的实际支持。循证社会心理干预措施,如行为治疗和家长技能培训规划等。

各国政府可加强对自闭症的宣传和治疗投入,使物理、社会和舆论环境更便捷、包容和支持。

愿所有来自“星星的孩子”,都能被温柔以待、健康成长,实现自己的“星语心愿”

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    2022-04-24 ms5000000464171069

    治疗治疗治疗,赶紧出来药物

    0

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    2022-02-24 ms6274291301401603

    疫情居家对孤独症发病的影响可以做一个调查,很大一部分儿童出现社交退化

    0

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    2021-04-17 ZJY

    有时候医生也很孤独且无奈的...

    0

  4. [GetPortalCommentsPageByObjectIdResponse(id=1213939, encodeId=fc72121393942, content=治疗治疗治疗,赶紧出来药物, beContent=null, objectType=article, channel=null, level=null, likeNumber=25, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=1fb18121220, createdName=ms5000000464171069, createdTime=Sun Apr 24 17:32:35 CST 2022, time=2022-04-24, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1197044, encodeId=d9fa119e04453, content=疫情居家对孤独症发病的影响可以做一个调查,很大一部分儿童出现社交退化, beContent=null, objectType=article, channel=null, level=null, likeNumber=24, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=e1361791515, createdName=ms6274291301401603, createdTime=Thu Feb 24 23:00:57 CST 2022, time=2022-02-24, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=957811, encodeId=fa8e95e811e6, content=有时候医生也很孤独且无奈的..., beContent=null, objectType=article, channel=null, level=null, likeNumber=43, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20201214/b3170121d995432ea306ae3a7809cc05/2cfb236f361b4d3c80ef8fdef4301832.jpg, createdBy=8ad35400531, createdName=ZJY, createdTime=Sat Apr 17 12:52:08 CST 2021, time=2021-04-17, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1527795, encodeId=f0ad152e7957b, content=<a href='/topic/show?id=68b5863e5d2' target=_blank style='color:#2F92EE;'>#自闭#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=28, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=86375, encryptionId=68b5863e5d2, topicName=自闭)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=159511872623, createdName=xiongke014, createdTime=Sun Apr 04 15:21:52 CST 2021, time=2021-04-04, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=953600, encodeId=2d94953600dc, content=你觉得他孤独,他不一定觉得有你就好, beContent=null, objectType=article, channel=null, level=null, likeNumber=53, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20210403/5ff406be14214a2382446bee2a6a5a17/d86ca8b32a014802a07fb644f93b3a73.jpg, createdBy=90132272125, createdName=废不废柴, createdTime=Sat Apr 03 18:24:15 CST 2021, time=2021-04-03, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=953483, encodeId=9e7b95348395, content=……, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20210403/1acdd402964a42658118a7707b789715/cb126c1d2f1445b4babb3332306dc34f.jpg, createdBy=adc35476397, createdName=Decinchen, createdTime=Sat Apr 03 11:16:29 CST 2021, time=2021-04-03, status=1, ipAttribution=)]
    2021-04-04 xiongke014
  5. [GetPortalCommentsPageByObjectIdResponse(id=1213939, encodeId=fc72121393942, content=治疗治疗治疗,赶紧出来药物, beContent=null, objectType=article, channel=null, level=null, likeNumber=25, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=1fb18121220, createdName=ms5000000464171069, createdTime=Sun Apr 24 17:32:35 CST 2022, time=2022-04-24, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1197044, encodeId=d9fa119e04453, content=疫情居家对孤独症发病的影响可以做一个调查,很大一部分儿童出现社交退化, beContent=null, objectType=article, channel=null, level=null, likeNumber=24, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=e1361791515, createdName=ms6274291301401603, createdTime=Thu Feb 24 23:00:57 CST 2022, time=2022-02-24, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=957811, encodeId=fa8e95e811e6, content=有时候医生也很孤独且无奈的..., beContent=null, objectType=article, channel=null, level=null, likeNumber=43, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20201214/b3170121d995432ea306ae3a7809cc05/2cfb236f361b4d3c80ef8fdef4301832.jpg, createdBy=8ad35400531, createdName=ZJY, createdTime=Sat Apr 17 12:52:08 CST 2021, time=2021-04-17, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1527795, encodeId=f0ad152e7957b, content=<a href='/topic/show?id=68b5863e5d2' target=_blank style='color:#2F92EE;'>#自闭#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=28, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=86375, encryptionId=68b5863e5d2, topicName=自闭)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=159511872623, createdName=xiongke014, createdTime=Sun Apr 04 15:21:52 CST 2021, time=2021-04-04, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=953600, encodeId=2d94953600dc, content=你觉得他孤独,他不一定觉得有你就好, beContent=null, objectType=article, channel=null, level=null, likeNumber=53, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20210403/5ff406be14214a2382446bee2a6a5a17/d86ca8b32a014802a07fb644f93b3a73.jpg, createdBy=90132272125, createdName=废不废柴, createdTime=Sat Apr 03 18:24:15 CST 2021, time=2021-04-03, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=953483, encodeId=9e7b95348395, content=……, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20210403/1acdd402964a42658118a7707b789715/cb126c1d2f1445b4babb3332306dc34f.jpg, createdBy=adc35476397, createdName=Decinchen, createdTime=Sat Apr 03 11:16:29 CST 2021, time=2021-04-03, status=1, ipAttribution=)]
    2021-04-03 废不废柴

    你觉得他孤独,他不一定觉得有你就好

    0

  6. [GetPortalCommentsPageByObjectIdResponse(id=1213939, encodeId=fc72121393942, content=治疗治疗治疗,赶紧出来药物, beContent=null, objectType=article, channel=null, level=null, likeNumber=25, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=1fb18121220, createdName=ms5000000464171069, createdTime=Sun Apr 24 17:32:35 CST 2022, time=2022-04-24, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1197044, encodeId=d9fa119e04453, content=疫情居家对孤独症发病的影响可以做一个调查,很大一部分儿童出现社交退化, beContent=null, objectType=article, channel=null, level=null, likeNumber=24, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=e1361791515, createdName=ms6274291301401603, createdTime=Thu Feb 24 23:00:57 CST 2022, time=2022-02-24, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=957811, encodeId=fa8e95e811e6, content=有时候医生也很孤独且无奈的..., beContent=null, objectType=article, channel=null, level=null, likeNumber=43, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20201214/b3170121d995432ea306ae3a7809cc05/2cfb236f361b4d3c80ef8fdef4301832.jpg, createdBy=8ad35400531, createdName=ZJY, createdTime=Sat Apr 17 12:52:08 CST 2021, time=2021-04-17, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=1527795, encodeId=f0ad152e7957b, content=<a href='/topic/show?id=68b5863e5d2' target=_blank style='color:#2F92EE;'>#自闭#</a>, beContent=null, objectType=article, channel=null, level=null, likeNumber=28, replyNumber=0, topicName=null, topicId=null, topicList=[TopicDto(id=86375, encryptionId=68b5863e5d2, topicName=自闭)], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=159511872623, createdName=xiongke014, createdTime=Sun Apr 04 15:21:52 CST 2021, time=2021-04-04, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=953600, encodeId=2d94953600dc, content=你觉得他孤独,他不一定觉得有你就好, beContent=null, objectType=article, channel=null, level=null, likeNumber=53, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20210403/5ff406be14214a2382446bee2a6a5a17/d86ca8b32a014802a07fb644f93b3a73.jpg, createdBy=90132272125, createdName=废不废柴, createdTime=Sat Apr 03 18:24:15 CST 2021, time=2021-04-03, status=1, ipAttribution=), GetPortalCommentsPageByObjectIdResponse(id=953483, encodeId=9e7b95348395, content=……, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=https://img.medsci.cn/20210403/1acdd402964a42658118a7707b789715/cb126c1d2f1445b4babb3332306dc34f.jpg, createdBy=adc35476397, createdName=Decinchen, createdTime=Sat Apr 03 11:16:29 CST 2021, time=2021-04-03, status=1, ipAttribution=)]
    2021-04-03 Decinchen

    ……

    0