Reseachers at Melbourne’s Alfred Hospital have undertaken a pilot study to investigate a potentially “delicate issue,” why parents decide to tell a child that he or she is autistic, today’s ABC News (Australia) reports. Notes child psychiatrist Jennifer Harrison, who helped run the pilot study:
“The main reason parents decided not to tell their child was that they were afraid of stigmatising the child, they were afraid of labelling the child.
“Some saw the diagnosis in a negative sense, as though it was a bad stamp on them.
“On the other hand, a number of parents - and the majority of parents - actually felt that informing their child of the diagnosis increased communication between them and their child.”
A follow-up study will involve more participants.
We haven’t yet had any kind of formal talk with Charlie about “what he is” or “what he has” or “what he’s diagnosed with.” Certainly the word “autism” gets heard around our household a lot, but not in the sense that”you have autism and that’s why things are tough.” It’s simply something that gets talked about.
From observing Charlie, it seems to me that he has a sense that he’s not like some other kids and that he does things differently from them. I have a vivid memory of a boy who had come to play as a “peer mentor” last year; this boy was riding Charlie’s scooter. Charlie likes to ride the scooter up and own the driveway, slow and steady—-and the other boy was doing wheelies off the front porch and down the stairs and striking poses of an Extreme Sport sort. Charlie stared and looked distressed: A therapist friend was there and she said, “I think he’s worried the scooter’s going to get broken!”
Whatever Charlie thinks when he hears the words “autism” and “autistic,” we do seek to emphasize that he’s fine just as he is and that—-when the going gets rough (getting on the bus this morning; Jim had to leave early for work, Charlie is still readjusting to getting up earlier for school after spring break; there were tears and a slow descent of the staircase)—-we try to communicate that we understand he’s not feeling good, that it’s not easy, that we know he’s trying.
And that there’s nothing to be ashamed of about that.
译文:
你的孩子知道自己是孤独症患者吗? [孤独症 Vox]
最近, 墨尔本的阿尔弗雷德医院的研究者对一个比较敏感的问题做了初步研究:为什么家长决定告诉自己的孩子他们患有孤独症. ABC新闻(澳大利亚)对此进行了报道.儿童心理学家, Jennifer Harrison 参与了此项研究, 她说:
“一些父母决定不告诉自己的孩子他们患有孤独症, 其中主要的原因是父母们不希望在孩子身上做标记,让他们觉得自己与其他正常孩子不一样.”
“有些家长以负面的眼光看待孩子被确诊为孤独症这一事实, 他们觉得这是对孩子的伤害.
“另一方面, 许多家长—绝大多数的家长却认为告诉孩子他们的病情有利于增进他们之间的沟通与交流.”
在今后的研究中, 研究者们将会针对更多患者进行分析.
我们从来没有正式的和查理谈过他的病情, 告诉他得了什么病. 当然, 在家里,我们经常会提到”孤独症”这个字眼, 但是我们没有明确对查理说他患有孤独症, 或者让他知道为什么这是个严重问题. 我们只是在家里偶尔谈到这个话题.
通过认真观察查理,我觉得他似乎知道自己和其他孩子有些不同.我到现在还清晰的记得, 去年有一个男孩来我家里玩, 他当时骑了查理的踏板车. 查理骑踏板车时通常都是慢慢的,稳稳的,沿着马路骑. 但是那个男孩骑着踏板车跳上前门廊, 从楼梯上滑下来, 还摆出像是极限运动的高难度姿势. 查理站在一旁看呆了, 很不舒服的样子. 当时正好我的一个治疗专家朋友也在那里, 她看到后说, “我觉得查理是在担心这个滑行车会被他弄坏.”
无论查理听到”孤独症”这个词时会怎么想, 我们总是想法设法让他知道他现在的这个样子很好, 一旦问题出现了(比如今天早上, 吉姆不得不很早去上班, 但是查理刚放完春假,所以早起让他很不习惯, 他哭着很不情愿地下了楼梯), 我们会努力告诉他我们知道他觉得不舒服, 我们也知道这很难, 他的努力我们都看到了. 并告诉他那不是什么丢脸的事情.