亞斯柏格和高功能自閉症之家

The effect on the child

對孩子的影響

What are the issues that are likely to arise in a family when one or, in some cases, both parents have AS? What affect can this have on the child and what is the most valuable support and help that can be offered within the counselling environment?

當家庭有一個家長（或在一些案例中，兩個家長）罹患亞斯伯格，在養育孩子的時候，可能會發生什麼問題？這件事情會對孩子造成什麼影響？在諮商時能提供的最有價值支援以及幫助是什麼？

Some of the main issues that arise are the parents’ difficulty understanding their child’s individual way of thinking and realising that the child’s thoughts and perceptions are different to their own. For example, when I saw Nicky she had just begun university and was finding it a real struggle to cope alone with the demands of living away from home. Nicky described how her father insisted that the whole family had to fit in with his inflexible routines; her upbringing was very controlled and completely dominated by her father. Time and routine seemed to be the centre of their lives - they had to get up at the same time, eat the same food on the same day at the same time, bathe at the same time and only watch the TV programmes he watched. He was very and religion also became a strict and inflexible routine in their lives. There was little time for fun and laughter in the household and, if the routines were broken, Nicky’s father would become reactive and highly anxious. They could not have friends round because they would interrupt his routine and he would stare at them, making them feel uncomfortable. He would say impolite things to her friends - one day he gave her friends a lift and he referred to them as ‘excess baggage’.

出現一些主要問題，是家長對於「了解孩子自己的思考方式，與家長他們的不同」這件事情是有困難的。舉例來說，當我看到Nicky她才剛剛開始上大學時，她發現不住在家裡頭要獨自處理的事情很多、非常地辛苦。Nicky描述，她的父親是如何堅持全家人必須遵照他缺乏彈性的規矩辦事。她的教養方式是非常受到控制且完全被父親所主導。時間與程序是他們生活的中心 -- 他們必須在同樣的時間起床，每天在同樣的時間吃同樣的食物，在同樣的時間洗澡且只能看父親看的電視節目。他很虔誠，宗教也變成生活中一個嚴格而缺乏彈性的程序。在她的童年中，很少有快樂與大笑的機會，此外，如果程序被破壞了，Nicky的父親會變得敏感及非常焦慮。他們沒有辦法跟周遭的人交朋友，因為這樣會打亂了他父親的程序，他會盯著他們，讓他們覺得不舒服。他會對她的朋友說一些不客氣的事情 -- 有天他順道載她的朋友一程，並說他們是「累贅」(按，這是雙關語，原意是過重行李)。

The impact this upbringing had was one that left her with no confidence in her ability to make decisions; she was vulnerable and had very low self-esteem. She tried hard to fit in with others and had developed little awareness of who she was. We worked on increasing her self-esteem and restoring her confidence in herself as an individual. She needed to learn to be autonomous and not feel guilty or fearful of being separate from her family. Helping her understand AS helped her to understand her father’s need for control and routine. Just this understanding helped her gain a very different perspective on how she had been so rigidly brought up. This highlights, again, the importance of understanding what AS is and the effect it can have.

這種教養方式會造成的衝擊，是讓她對自己下決定的能力缺乏自信。她脆弱而低自尊。她盡可能與別人相處融洽，且發展出她是誰的自我覺察。她致力於增加自尊心，並恢復她個人的自信。她需要去學習自主，不會為此感到罪惡感或擔心被家庭切割。幫助她了解亞斯伯格，也幫助她了解她父親對於控制以及程序的需要。這個了解，幫助她對於被如此嚴格養大這件事情獲得一些不同的觀點。這點突顯出，再提一次，了解什麼是亞斯伯格以及它帶來的影響是重要的。

Valued for acheivement rather than self

成就的價值，遠超過自我的價值

Another issue frequently experienced by adolescents brought up by an AS parent is one of not feeling valued for who they are but rather for what they achieve. This was well described by an 18 year old who had just received her A’ Level results. She had worked hard and done well, obtaining three A’s and a B. The B was in Chemistry, which her father, who had AS, had a first at Cambridge. He was bitterly disappointed in his daughter’s B grade and focused on this entirely, completely ignoring the three As she had achieved. She felt totally devalued and very hurt that none of her hard work had been recognised or acknowledged. Her father had belittled her and left her feeling guilty and despairing.

另一個由亞斯伯格家長帶大的青少年，常碰到的經驗是，他們的價值常不在「他們是誰」，而是「他們有什麼成就」。這是一個18歲大、剛拿到成績A級的女孩所描述的。她很努力也做得很好，拿到了三個A級跟一個B級。拿到B的是化學。她的亞斯伯格父親是劍橋第一名畢業。他父親對女兒拿到B感到痛苦與失望，且完全專注在這件事情上，卻完全忽略了另外三個拿到A的項目。她感到被貶低了，她的努力沒有被認可或承認。她的父親輕視她，並讓她感到內疚和絕望。

This client was 18 years old but this situation can occur at any age; it might be a five year old’s failure at doing up laces, a 10 year old not winning a gymnastic competition, a 13 year old failing a science project or a 15 year old not winning a cross-country race. The expectations AS parents have of their children can be very high and it can be taken at a very personal level when they do not live up to those expectations. This can leave children feeling very undervalued and can push them into having unrealistic expectations of themselves they can achieve. They may become desperate in their attempts to please their parents and receive the praise they so desperately seek, or they may rebel and refuse to conform to any authority.

這個個案是18歲，但是這種狀況可能會在任何年齡發生。它可能是一個五歲在綁鞋帶的挫折、一個10歲沒有贏得體操比賽、13歲在科研專案的失利，或15歲沒有贏得越野比賽

。亞斯伯格父母對子女的期望非常高，當孩子達不到父母的期望時，這種期待會轉化成非常個人層面的事情。這會導致孩子感覺被父母低估了，而且使得他們對自己可以達到的期望有不切實際的預期。當他們嘗試去討好父母病或或得拼命追求的讚美，他們會覺得絕望，或者可能會反抗並拒絕配合權威。

When working with children who have had this type of pressure put on them, it is important to acknowledge the value of who they are and not just what they achieve. The counselling should focus on their personal qualities, reinforcing that it is OK and human to be just good enough. Helping them to understand AS and why their parents have such high expectations of them is a crucial part of their recovery.

當與背負了這種型態的孩子在一起時，了解「他們是誰」的價值是很重要的，而非只關心「他們作到了什麼」。這個輔導應該聚焦在他們的個人特質，強化他們「這樣就好了」跟「這樣對任何人來說都夠好了」。幫助他們了解AS，和為什麼他們的父母對他們的期望如此之高，是使其恢復的的一個關鍵部分。

AS causes difficulty in using theory of mind, which means a difficulty in being able to put oneself in the other person’s shoes. Due to this, the AS parent cannot see the pain they are causing their child by having such high expectations and often believes it is in the child’s best interest that they achieve more and more. The expectations the parent will have of their child will be based on what they believe their child should achieve and will not

always take into account that this might be higher than what their child’s developmental level or capacity allows.

AS造成的困難在於使用心智理論，這意味著有無法了解他人的同理心的困難。因為這個原因，亞斯伯格父母沒辦法看到對孩子過高的期望造成孩子的痛苦，而且常常認為讓孩子達到越來越多的成就，是對孩子是有利的。亞斯伯格父母對孩子的期望，是基於他們相信他們的孩子應該達到的，而且常不會顧及孩子的發展水準或者能力可及與否。

Personality development

人格發展

A child’s personality is developed by what is reflected back at them from their parents. Initially this is non-verbal - babies look into their parents’ eyes from a very early age and are sensitive to the way they are handled and cherished. Sometimes, a heightened sensory sensitivity can present itself in individuals with AS and this can cause an extreme reaction to certain smells, touch, taste, sight or sound. For some AS parents, women in particular,there can be an extreme aversion to their child’s vomit, soiling, smell, crying or, in some extreme cases, their physical contact. There is little the AS parent can do to combat this since, for them, their reaction is real and, in some case, almost painful. To the child, it can be emotionally disabling and have a profound affect on how they feel about themselves; some of the adolescents I see describe never being hugged or touched by their AS parent.

孩子的人格發展，是父母身上有什麼特質，反映給孩子身上的的就會有什麼樣的發展。一開始是非語言的特質，例如小嬰兒早期怎麼凝視父母的眼睛，以及對他們被擁抱或照護的方式非常敏感。有時候亞斯伯格個人的高度敏感感官，對於味道、碰觸、味覺、景像或聲音，都可能會造成他們極端的過度反應。對一些亞斯伯格父母來說，尤其是女性，孩子的嘔吐、弄髒、味道、哭泣，或者在一些例子中，跟孩子的身體接觸，都會讓她感到厭惡。這些亞斯柏格家長對於對抗這樣的感覺能做的不多，他們身上的過度反應是真實的，有一些例子甚至會感到痛苦。對於孩子而言，這是情感失能，並且會對他們如何感覺自我造成深刻的影響。我甚至看過一些青少年的描述，他們不曾被他們的亞斯伯格父母擁抱或碰觸過。

Words are also a way in which children receive a real message about themselves and can be valuable in positively reinforcing the child’s self esteem and self awareness. Statements such as ‘what a kind girl you are’, or ‘how considerate that was’, is how we learn who we are at a very early age. Eye contact may be difficult for the AS parent as may finding words that emotionally reinforce the positive attributes of the child.

語言也是一種孩子們接收關於他們自己真實訊息的方式，對於正增強孩子的自尊及自我意識非常有價值。諸如「你真是個善良的女孩」或「好體貼」，是我們早期如何學習我們在他人眼中是怎麼樣的人的方式。眼神接觸對亞斯柏格家長可能是比較困難的，就如同找到適當的語句去增強孩子的正面特質，也是困難的。

The AS parent will not be able to look intuitively into their child’s mind and recognise the invisible qualities their child has, such as kindness, caring, and honesty. They may judge their child by what is visible - tidiness, school achievements and time-keeping, for example. They may treat their children as mini-adults and have the same expectations of them as they have of themselves. The AS parent is often unaware of the damage this can do to the child’s self-esteem. Liane Holliday Willey (5) talks on her video with Tony Attwood about how she bought books on child development so she could better understand her non-AS children. Liane had the incentive, understanding and motivation to take action and do something about the difficulties that having AS were causing in her parenting skills. Unfortunately, due to lack of awareness and understanding, this may not always be the case.

亞斯伯格父母無法直覺就看穿孩子的心思，以及理解孩子無形的特質，例如善良，關懷和誠實。他們會以看得見的事物來評價孩子，例如整潔，學校的成就和守時。他們就是把孩子當小大人看待，把自己的期望當成孩子相同的期望。亞斯伯格父母常常沒有意識到，這樣會傷害孩子的自尊。Liane Holliday Willey (5)在與Tony Attwood對談的影片中提到，他為了更了解自己沒有亞斯格的孩子，而去購買兒童發展相關的書籍。Liane有動機跟理解去採取行動，做一些對罹患亞斯伯格來說比較難的照顧技巧。不幸的是，由於他們缺少了覺察能力跟了解，所以不會總是有這種好狀況。