亞斯柏格和高功能自閉症之家

文章首次發表於輔導兒童和青少年（CCYP）2005年夏季
輔導兒童和青少年（CCYP）是與兒童和青少年工作的專業心理諮商和治療的專業季刊。

http://www.maxineaston.co.uk/published/Asperger_Family.pdf

翻譯:帆爸、嫺霓

Growing up in an Asperger family                         by Maxine Aston
在亞斯柏格家庭長大的孩子                                 作者: 瑪克辛阿斯頓

Sarah was seventeen when she first came to see me; she had been in therapy before and had a history of eating disorders, self-harm and anxiety. Sarah was not the first member of her family who had found their way into my counselling room as I had been seeing Sarah’s parents for almost six months.

莎拉第一次來見我的時候才十七歲。在這之前她正在進行治療，莎拉被診斷為飲食失調、自我傷害跟焦慮。莎拉並不是他們家庭成員中第一個來我的諮詢室的，我在大約六個月前就曾經見過莎拉的父母。

Sarah’s mother had initiated counselling for herself and her husband, as she suspected that her husband was on the Autistic Spectrum but had not realised she was also affected. During our counselling sessions, I recommended that both went for a diagnosis and this resulted in a diagnosis of Asperger syndrome (AS) for both of them.

莎拉的母親查覺到，她的丈夫屬於自閉症光譜，因此為了她跟丈夫而來諮詢。但是她沒有意識到，她自己也是在自閉症光譜內。在幾次的諮詢後，我建議他們兩位都去評估，最後診斷結果證明他們兩位都患有亞斯伯格症候群。

During one of my sessions with Sarah’s parents I raised the issue of their only daughter and asked if they would describe her to me. They described her as being a ‘problem’. Her father felt she did not put enough effort into what she did and could have done better in her GSCE’s. He also said that she played her music too loud and made a mess everywhere. He went on to describe how she would walk around eating a piece of toast or cracker bread without using a plate, dropping crumbs on the floor. Sarah’s mother joined in to say how hard she had tried to make things better for her daughter and how her daughter just argued with her all the time. Totally confused, she recounted how she had told Sarah that if only she would concentrate on her work and stop spending time with her loud friends, she might be happier.

某次莎拉的父母諮詢時，我提到了他們的唯一的女兒，並詢問他們是否可以對我描述他們的獨生女。他們形容自己的女兒是個「問題」。她的父親認為她做事不夠努力，而且她的GSCE (英國的國中畢業考)應該能更好。他也說，她放音樂太大聲，把每個地方都弄得亂七八糟。莎拉的父親繼續形容莎拉會邊走邊吃吐司或餅乾，把麵包屑掉一地，卻不使用盤子。沙拉的母親也插一腳，開始說她為了女兒盡力把事情做好，但女兒每次都只會跟她起爭執。莎拉的母親完全搞不懂，她描述她怎麼告訴莎拉，只要莎拉能夠對工作更專注，而且不要在她那些吵鬧的朋友身上浪費時間，莎拉可能會更快樂。

As I listened to Sarah’s parent’s describe their daughter, I realised they had not told me anything about who she was, only about what she did that they found frustrating. With this in mind, I asked ‘How do you think your Autism had affected Sarah?’ This question was met with total silence. Sarah’s mother was the first to reply by asking what I meant. I explained that presuming Sarah was not on the Autistic spectrum, how would they know if they had met her needs and really understood who their daughter was?

當我正在聽莎拉的父母描述他們的女兒時，我意識到，他們並沒有告訴我關於莎拉是怎樣的女孩，他們只是描述關於莎拉做了哪些讓他們感到灰心沮喪的事情。發現了這件事情，我問他們「你們認為你們的自閉症特質是否影響了莎拉？」這個問題導致了一陣安靜。莎拉的母親第一個回應，問我我的意思是什麼。我解釋道，假設莎拉不是自閉症，他們怎麼知道他們是否滿足了莎拉的需求，而且真正的了解了解自己的女兒呢？

Sarah’s parents struggled to understand this concept and it was becoming clear that they did not truly comprehend their daughter’s world or what it consisted of. They asked if I thought it would be useful to see their daughter. I said I would be happy to see Sarah, but it was important that she was also happy to see me and we agreed that the sessions would be confidential to Sarah unless she gave permission otherwise.

莎拉的父母親花了不少力氣才了解這個概念，而且越來越清楚他們並不真的理解女兒的世界，或者她的世界包含了什麼。他們問我，如果帶女兒來給我看，是否會有幫助。我說，我會很高興認識莎拉，但也要莎拉很樂意來見我才行。我們也同意，這個諮詢是保密的，除非獲得莎拉的同意。

So now, with Sarah in front of me, she was aware of her parents’ diagnosis but not aware of what it meant. I explained AS to Sarah and its potential effect on her upbringing. It was not long before Sarah was in a flood of long overdue tears. “At last” she cried, “I finally understand what caused all the problems – I have spent all these years believing it was me. At times, I thought I was going mad. I knew my parents loved me, but could not understand why I never felt it!”

所以，此刻莎拉在我的面前，她聽到了父母的診斷，卻沒意識到這件事情的意義。我對莎拉解釋什麼是AS，以及這件事情在莎拉成長過程中帶來的影響。不久，莎拉就被淚水給淹沒了。「終於」，莎拉哭著說，「我終於了解是什麼造成這些問題－我花了這麼多年說服自己這是我的錯。有時候我甚至覺得我快要瘋了。我知道我的父母愛我，卻不了解為什麼我不曾感受到」

Communication and AS
溝通能力與亞斯伯格症

AS does not create bad parents; bad parents exist irrespective of whether or not they are affected by AS. AS does however cause difficulties in communication, social interaction and the ability to comprehend another person’s state of mind or perception, in other words, empathy. It is this difficulty with empathy that has the biggest impact on the parents’ ability to understand their children and to recognise that their thoughts, needs and perceptions are different to their own.

亞斯伯格症不會創造壞的父母，但不管是否罹患亞斯伯格症都有壞父母。亞斯伯格症的確造成溝通、社交互動以及理解他人內心狀態或感覺的障礙。換句話說，就是造成同理心的困難。正是這種同理心的困難，讓父母在了解子女、認知他們的思維、需要、理解跟自身不同的能力上產生了最大的影響。

Gillberg sums this up well (1):

Gillberg 總結這件事（1）：

The fact that some parents of children with HFA and AS themselves have autism-associated features begs the question of parenting skills in such individuals. It would not be unreasonable to assume that poor empathy in the parent might contribute to some behavioural/psychological problem in the child quite apart from any genetic influence. However, one might equally argue that a parent with similar but milder problems would be better able to understand and cope with some of the child's problems because they may be perceived as personality style rather than 'disorder'. Future studies should seek to explore these issues and try sensibly and sensitively to avoid the mistake of the past regarding the scape-goating of parents.

事實上，一些有HFA和AS兒童的父母，他們自己有自閉症相關的特質，導致了在這樣因人而異的教養技巧問題。父母缺乏同理心、可能會造成孩子除了基因之外的行為/心裡問題，並不是不合裡的假設。然而，有人可能會相對的提出反論說，父母有相似但較輕微的問題，會比較容易理解以及接收到孩子的問題，因為它們可能被視為個性上的風格，而不是「障礙」。未來的研究應尋求探討這些問題，並嘗試理智而敏感地去避免像過去一樣，把問題怪罪到父母身上的錯誤。

Gillberg points out that poor empathy skills, part of the core affects of having AS, could have a negative effect on the child’s mental health and outlook. If the child, too, is on the Autistic spectrum, the AS parent may have a better understanding of their child. In some cases, this is undoubtedly true. In her book Pretending to be Normal (2), Liane Holliday Willey talks openly about the struggles of being a parent with AS and confesses that she finds understanding her children with AS far easier than those that aren’t.

Gillberg指出，缺乏同理技巧，罹患了亞斯伯格症核心影響的部分，會對孩子的心理健康以及未來造成負面的效果。如果孩子也是位於自閉症光譜中，亞斯伯格父母會更能裡解他們的孩子。在一些案例中，這是無疑的。在她的著作「假裝正常」中，Liane Holliday Willey開放的說出她身為亞斯柏格家長的艱辛，並坦承她發現她能輕易理解罹患了亞斯柏格的孩子，但較難理解其他沒有罹患亞斯柏的孩子。

Liane says:
I worry a lot about the influence I have on my daughters' self esteem and happiness. I do not want to fill their lives with anxiety or shame. My concern for them pulls me toward the mainstream even if I bruise along the way. I feel badly I do not encourage them to have many friends over…….I regret that small talk with the parent’s of my daughters’ friends is not easy for me. I am shamed when I do not know how to act. I dislike myself very much when hear myself say. ‘Be quiet! Stop. Slow down. I can’t keep up. Please don’t talk to me all at once’ when my girls are only happily excited to share their day with me.

Liane說到：
我很擔心我會對我女兒的自尊及快樂造成影響。我不希望他們的生活充滿了焦慮或羞恥。即使我走來ㄧ路蹣跚，我對他們的關心仍將我拉向主流的方向。我對我沒有鼓勵他們多交朋友而感到很糟糕。我感到遺憾的是，跟女兒朋友的父母間的短聊，對我來說並不容易。我對我不知道該如何作感到羞恥。當我的女兒興奮愉快地與我分享一天的生活時，我非常不喜歡聽到自己說：「安靜！閉嘴！講慢點！我跟不上你說的！請不要所有人同時間跟我說話。」

Liane has clearly developed an understanding of both the positives and negatives that can affect the parenting skills of an adult with AS and she has done much to explore, understand and give her children the best upbringing she could. Liane is a ‘good-enough’ parent but what happens if the parent is not aware they are on the Autistic spectrum? In my research (3) I divide my original sample into two groups: the first was women married to, or living with, a partner diagnosed with AS where both partners understood and accepted the effect this can have; the second was women married to, or living with, a partner who did not accept they were on the Autistic spectrum despite the fact their child had been diagnosed and it was quite clear that this highly genetic disorder (4) had been inherited from the father. When if they believed their partner’s condition had caused problems with the children, the answer ‘yes’ increased by 26 per cent in the latter group, indicating that awareness and understanding of AS may play a crucial role in difficulties raising children. However, it needs to be noted that even in the group who were aware, 40 per cent said they were having problems that could be directly attributed to one of the parents having AS.

Liane很清楚的發展出對於亞斯柏格成人教養技巧的正面與負面的理解，且她探索、理解並給了孩子她所能給予的最佳教養。Liane是一個夠好的母親了，但如果家長並沒有意識到他們也罹患了自閉症，會發生什麼狀況？

在我的研究(3)中，我把我的原始樣本分成兩組，第一組是女性嫁或生活在一起的人被診斷為亞斯伯格，且雙方都懂且能接受這個特質造成的影響。第二組是女性嫁給或生活在一起的人並不接受自己罹患自閉症即使事實上孩子已經確診且這很明顯這是父系的遺傳性疾病(4)。當他們相信父親的狀況會造成孩子的問題，後者回答「是」的比率增加了26%，顯示有意識到並能了解亞斯伯格，可能在教養孩子的困難度上扮演關鍵角色。然而，要補充的是，即使在已經認知亞斯柏格的第一組，仍有40%表示他們遭遇到了一些問題歸因於父母之ㄧ罹患了亞斯伯格。