与威廉姆斯综合征共存, “自闭症的对立面” (2014)
Living with Williams Syndrome, the 'opposite of autism' (2014)

原始链接: https://www.bbc.com/news/health-26888280

焦虑可能会因未被诊断而加剧,因为人们会感到更加孤立。赫斯特女士的慈善机构没有获得政府的任何资金,依靠筹款和捐款。她为威廉姆斯综合征患者及其家人举办烧烤、圣诞派对和假期。“我认为政府应该多做一些,”她说。“看到自闭症获得大量资金涌入时,这可能会很困难。威廉姆斯综合征患者和患有其他精神疾病的人一样需要帮助,在很多方面他们更需要支持和关注,而所有这些都需要成本。” 威廉姆斯综合征患者的预期寿命与其他人群没有差异,有些人可能会找到工作,通常是在志愿岗位上,在那里他们乐于助人的天性可以发挥作用。杜伦大学心理学系的高级讲师黛比·里比博士一直在研究这种疾病12年。

这个Hacker News讨论围绕一篇2014年BBC关于威廉姆斯综合征(WS)的文章,该综合征常被描述为“自闭症的对立面”。虽然文章将其描述为这样,但评论员们争论这种比较的准确性。 许多人指出,WS涉及高度的社交性和同理心,但也伴随着较低的智商和对感官刺激的焦虑——这些特征也存在于自闭症谱系中,使得简单的“对立面”分类无益,甚至可能强化刻板印象。多位用户,包括自闭症人士,强调自闭症并非铁板一块,并且自闭症患者并非缺乏同理心。 对话深入探讨了核心差异,认为WS涉及缺乏对社会线索和刺激的过滤,而自闭症可能涉及对这些线索的*解读*方式不同。其他遗传状况,如脆性X综合征和hEDS,也被提及具有重叠的特征。最终,讨论强调了两种疾病的复杂性,并告诫人们不要过度简化。多位用户也指出,认识到对那些鲜为人知的疾病(如威廉姆斯综合征)患者的福利需求的重要性。
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原文

Anxiety can be made worse if the disorder is not diagnosed, she said, as people feel even more isolated.

Ms Hurst's charity does not get any funding from the government, relying on fundraising and donations. She puts on barbecues, Christmas parties and holidays for people with WS and their families.

"I think the government should do more," she says. "It can be difficult when you see the surge of funding for the tidal wave of autism.

"WS people are just as needing as other people with mental disorders and in many ways they are more needing of support and attention, and that all comes at a price."

People with WS do not have a lower life expectancy than other people, and some may go on to get jobs, most often in a voluntary capacity, where their helpful nature can be useful.

Dr Debbie Riby, senior lecturer in the Department of Psychology at Durham University, has been working on the disorder for 12 years.

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