亞斯柏格和高功能自閉症之家

The sibling effect

手足的影響

Another issue that may exaggerate the problems caused for the child is whether there are siblings. Sarah, the client I introduced at the beginning of this article, was an only child. This can be the most problematic upbringing for a child with an AS parent as it precludes having a sibling to play with, confide in and, most importantly, bond with. A young man who had a father on the Autistic spectrum told me he remembered that every Christmas and birthday his parents would buy him lots of toys and games; the trouble was that his parents would not allow anyone to come and play with him. This young man was struggling with being able to share and interact with other people and this was causing him difficulty in forming a relationship. Potentially he could also present some AS ways but, without doubt, this would be severely influenced by the lack of encouragement to interact that he experienced as a child.

另一個可能讓問題更嚴重的因素，是孩子是否有手足。莎拉，前面我在這章節開始時提過的個案，是獨生女。最棘手的問題可能是，父母是亞斯伯格、但沒有手足的孩子，就沒有人可以一起玩或相互傾訴，更重要的是，沒有人可以陪他建立親密關係。一個有自閉症父親的年輕人告訴我說，他記得每個聖誕節還有生日，他的父母都會為他買一堆玩具或遊戲；但問題是，他的父母拒絕任何人到他家陪他一起玩。這個年輕人疲於應付與他人分享或互動，這導致他在建立關係上有很大的困擾。他可能會在有些時候顯露出一些亞斯柏格的行為，但無庸置疑的，這個嚴重影響，是由於他在孩提時代、父母缺少鼓勵他去與旁人互動導致的。

Adolescence is often the hardest time for children growing up with AS parents as this is when they may begin to challenge parental control, opinions and demands. The AS parent will struggle to understanding their adolescent children and the developmental stage they are in and may see their behaviour as unacceptable. The parent may attempt to control their teenage child by undermining them or by making it difficult for them to have friends around, not because they wish to stop their child having friends but because they will not understand the importance of friendships as they themselves may have no need of friends. Some adolescents have given examples of their AS parent being very rude to their friends. One girl described how her father told her over weight friend that she looked like a Sumo wrestler. Her father had simply spoken his thoughts but the result was that her friend never returned.

青春期是這些孩子成長過程中最辛苦的時期，對父母而言也是，這個時期他們可能開始挑戰父母的控制、意見和要求。亞斯伯格父母對於了解十幾歲青春期孩子的感到無法招架，處於孩子成長階段的他們會認為孩子的行為難以接受。父母會嘗試藉由「破壞他們」或「讓孩子很難交朋友」來控制他們的青春期孩子，不是因為他們希望阻擋孩子有朋友，而是因為他們不了解朋友有多重要，就如同他們自己不需要朋友。一些青春期的孩子，會碰到亞斯伯格父母對他們的朋友非常粗魯的狀況。有個女孩描述，她的父親如何告訴她過重的朋友她看起來像個相撲選手。她的父親只是單純的說出他的想法，但結果是，她失去了這個朋友。

Sometimes an AS parent can have a favourite child and almost completely exclude the rest of their children. This can cause much sibling rivalry and feelings of jealousy and low self-esteem in the child who is not the favourite. The effect can be even more exaggerated if the AS parent is a step-parent. AS parents struggle to relate to their own biological children and experience even more difficulty if the child is not their own.

有時一個亞斯伯格父親或母親，會有個最喜歡的孩子，卻幾乎完全忽略了其他孩子。這會導致不受喜愛的孩子發生許多手足衝突跟忌妒，以及缺乏自尊。如果亞斯伯格父母是個繼父或繼母時，這影響會更誇張。亞斯伯格父母對親生的孩子就已經有連結上的困難，對於不是自己生的孩子會遭遇更多的困難

The reason for this can be explained by understanding that AS is a developmental disorder; this means that, on an emotional level, the developmental stage stops at pre-puberty or even younger. The effect this has as an adult is that when they become emotional they will revert to child state and therefore often perceive their children, especially step-children, as competition. The AS father may compete for mum’s attention and not understand that mum’s responsibility and love, for her children, is different from her love for him. He can at times be highly competitive and behave in a way that is very childlike in order to divert attention onto him. If this does not work, he may distance himself altogether and have little to do with the children at all.

只要了解亞斯伯格是種發展障礙，就可以解釋為什麼會有這樣的狀況。這意味著，在情感層面上，他們的發展在前青春期或更年輕的階段就停止了。對成人的影響，是當他們變得情緒化的時候，他們的情緒能力會變回孩童階段，會把自己的孩子（尤其是繼子女）視為競爭對手。亞斯伯格父親可能會爭奪母親的注意，卻不了解母親面對孩子時的責任跟愛，與面對亞斯格父親自己的愛是不一樣的。有時他會採取是高度競爭性和非常孩子氣的行為方式，以轉移母親的注意力到他身上。如果這不起作用，他可能完全撇清自己，並且根本不做什麼在孩子身上。

Parental separation

父母分居

I sometimes see parents who are separating or divorcing and this is often when the mother may have many concerns regarding custody. If it is the father who has AS, her concern might be whether he is able to care adequately for the child since an AS parent could become distracted while looking after the children. One woman I saw reported coming home from college to find her husband had left the children unattended because his employer had rung with an issue they needed him to address. It had not occurred to him that a seven year old was too young to be left alone.

我有時會看到父母分居或離婚，母親可能常常關注在於監護權上。但如果孩子的父親是亞斯伯格，她的關注可能是他是否能夠充分照顧子女，因為亞斯伯格父親可能在照顧孩子的時候分心。我看過有個母親報告說，她從學校回家時發現她的先生已經離開，孩子無人照料，因為他的老闆有事打電話來，他們需要他去處理此事。他沒想到有個七歲小孩太小了不能單獨在家裡。

Concerns such as these may result in some traumatic custody battles and the childern may find themselves in the middle. Childern are unlikely to understand why the non-AS parent is so concerned and may resent her for not letting them spend the time they want with the other parent or, perhaps, they do not want to go with the AS parent and resent being made to do so. It is at this time that all family members, in particular, the older children, may become confused and in need of extra support

由於這些原因，可能會導致一些痛苦的監護權戰爭，而孩子會被夾在中間。孩子不太可能了解為什麼非亞斯伯格的家長是如此的擔心，且可能會由於母親不讓他們花時間陪伴父親而感到厭惡，或者，他捫不想跟罹患亞斯柏格的家長一起，並討厭被迫這麼做(意指監護權被判給亞斯柏格家長)。這個時候，所有家庭成員，尤其是年齡較大的兒童，可能會變得困擾且需要額外的支持。

These are all issues that anyone working with children and young people who have parents on the Autistic spectrum will need to understand. Being raised with an AS parent will present a particular set of difficulties unique to this group and different from other types of upbringing. Often the AS parent will have the best intention in the world for their children but, unfortunately, it will often only be from their perspective, not the child’s. Without support this can result in the child being confused, emotionally insecure and needy, with low self-esteem. A similar effect is also found in the partner of an AS adult, which appears to be caused by the emotional deprivation that can occur in the relationship. I call this Cassandra Affective Disorder. The Cassandra affect was first discussed in Karen Rodman's book Is anyone Listening? (6) where partners and adult children discuss the effects of living with a partner or parent with AS.

所有這些問題，是任何與家長患有自閉症的兒童及青少年一起工作的人需要了解的。被亞斯柏格家長養大的孩子，會出現一些特別且獨一無二的困難，與其他類型的教養不同。亞斯伯格父母會為他們的孩子做世界上最好打算，但是很不幸的，這常常只是從他們自己的角度出發，並不是從孩子的角度。不支持孩子，會導致孩子覺得困惑、情感上有不安全感和有需要，以及低自尊心。類似的影響同樣會在亞斯伯格成人的家人身上發生，似乎是由於雙方關係的情感剝奪導致。我稱之為「卡珊德拉情感障礙」。卡珊德拉障礙最早是在Karen Rodma的書「Is anyone Listening?」中討論到，書中的家長與成年的孩子討論與亞斯格格的親人或家長同住的影響。

Websites such as ASpar (7) for the adult children of an AS parent have been set up to offer support. If a counsellor can show understanding of and insight into their young client’s world, this in itself will do much to feed their desperate need to be acknowledged and understood for who they are, not what they do.

針對父母是亞斯伯格的成年子女，諸如ASpar（7）網站可提供協助。如果諮商師可以展現更多理解以及看透這些年輕個案的內心世界，就可以滿足很多個別的需求，讓他們了解他們是誰，而不是他們做了什麼。

References:
1. Gillberg C Asperger's Syndrome and High Functioning Autsim. Br J of
Psychiatry. 1998;172, 200-9.

2. Holliday Willey, L. Pretending to be Normal, Living with Asperger’s Syndrome. London Jessica Kingsley; 1999.
3. Aston, M.C. Aspergers in Love: Couple relationships and family affairs. London. London: Jessica Kingsley; 2003.
4. Bailey, A., El Couture, A., Gottesman, I et al. Autism as a Strongly Genetic Disorder: Evidence from a British Twin Study. Psychological Medicine, 1995;25:63-77.
5. Holliday Willey, L. Crossing the Bridge. USA: Michael Thompson Productions; 2000. 
6. Rodman, K. Is Anyone Listening? London: Jessica Kingsley; 2003.
7. ASpar. Information, Support, Advocacy for people raised by an Autistic parent, or a parent with AS. http://www.aspar.klattu.com.au
Maxine Aston is a Relate-trained couples counsellor and has been working as a counsellor for nine years. She runs her own counselling centre and specialises in couples when one or both are affected by AS.
Maxine Aston’ s website:
http://www.maxineaston.co.uk ©2005 Maxine Aston

參考文獻： 

1． 霍利迪威利，L.假裝是正常的生活，與阿斯伯格綜合徵。倫敦傑西卡·金斯利; 1999年。 

2． 阿斯頓，MC Aspergers的愛：夫妻關係和家庭事務。倫敦。倫敦：傑西卡金斯利; 2003年 

3． 貝利，答，答：厄爾尼諾裳，戈特斯曼，我等。自閉症作為一個強的遺傳性疾病：從英國雙生子研究的證據。精神醫學雜誌，1995; 25:63-77。

4． 霍利迪威利，屬過橋。美國：邁克爾·湯普森2000年 

5． 羅德曼，K.是有人傾聽嗎？倫敦：傑西卡金斯利; 2003年

6． ASpar。信息，支持，倡導人提出由自閉症家長，或有AS的父母http://www.aspar.klattu.com.au 

瑪克辛阿斯頓是一個訓練有素的相關夫婦輔導員，並已作為一個九年的輔導員工作。她經營著自己的諮詢中心，專門在夫妻一方或雙方都受到AS的影響。