不惑之年的意外之“禮”

Watching my mother’s sleeping body 1）strapped to a hospital bed， carried downstairs and put into an ambulance， was like watching a silent movie in slow motion. My mind tried to make sense of the situation. Why were they taking her away？ My father was convinced she was “mental” and had signed her into a psychiatric institution. My mother had always been different. She was socially awkward， had no friends， and didn’t like to be touched or hugged. Years later， comments my father made about her unfeminine ways would finally make sense to me.

After three days we were allowed to visit. A 1980s UK psychiatric ward is not something any 14-year-old should experience. It was incredibly frightening and sad. Mum was happy to see us. “I have done everything they asked of me， and I can come home now！” she exclaimed. I’ll never forget her face when they refused. Her mistake was a huge meltdown. She was dragged away， drugged， and her true spirit was gone forever.

Over the next 15 years， she was permanently drugged as they tried to find a combination that worked. One such combination made her psychotic and she jumped from the roof. She became lost in her own world after 18 sessions of 2）shock therapy. Eventually， her life ended tragically when they gave her a toxic combination of medication. She was finally gone from the tormented world of institutions， and I grew up with an enormous fear of mental health organisations and professionals， and that I could also have schizophrenia， 3）manic depression and 4）paranoia （as they misdiagnosed my mother）.

Throughout my life， I struggled to fit in. Social situations overwhelmed me， and making eye contact was painful. I was labelled as stuckup， but the reality was that I just had no idea how to carry a conversation. I didn’t understand the world， and the fear of being locked away constantly made me fearful.

In the mid-1990s， I met Paul， who is now my partner. He understood me （and vice versa）. Years later， an advertisement about Tourette’s made me wonder whether there was something different about us. Modern technology meant that it was now much easier to search for such things， and I soon realised Paul had a form of autism， and a lot of the symptoms were ringing bells with me.

The word autism had previously brought to mind images of a non-verbal person flapping hands and rocking in the corner， shut off from the world. I never realised that the Autism Spectrum could be so diverse. Days of researching the internet， reading books from the library， and even watching a movie called 5）Mozart and the Whale about a couple with Asperger’s， was an emotional 6）rollercoaster for both of us.

Paul collapsed in the middle of cooking dinner one night. His legs went weak from the sheer enormity of it all. In some ways it was like going through the five stages of grief： disbelief， grief， anger， despair and acceptance. We both went to see a psychologist. Paul was quickly diagnosed with Asperger’s Syndrome， however I was initially misdiagnosed with Bipolar Disorder. My fears were ignited； I was going to end up in an institution for the rest of my life. I left the office in despair. I didn’t know then that women and girls with autism or Asperger’s are often misdiagnosed with bipolar or a personality disorder. As time went on Paul flourished， finally able to understand himself， but I felt doomed. I could not make the connection to my misdiagnosis of bipolar.

Six months later， we saw a new 7）GP. She quickly confirmed I did not have bipolar. She watch the odd interactions between Paul and I， and sent me to a psychiatrist. I was videoed， filled out questionnaires， wrote an essay about my childhood， and completed reading and tracking tests which showed I had a learning difficulty despite having an IQ over 150. My final diagnosis was Asperger’s and 8）ADHD.

At the time of testing， it was explained that my Asperger’s was “different”， however now a female profile of Asperger’s is emerging. A new diagnostic tool designed by Professor 9）Tony Attwood has improved the diagnostic process， sparing girls and women from damage caused by misdiagnosis. Finally I also had acceptance in my life. We both now understand who we are， which gives us personal empowerment. We no longer listen to naysayers. More importantly， we now have a direction and a purpose to our different， but no less important， lives.

Barb and Paul are embarking on a year-long motorcycle ride around Australia to film a new documentary， Autism All Grown Up， which will investigate the difficulties faced by adults on the spectrum.

目睹母親熟睡的身體被綁在擔(dān)架上抬下樓，并被放進(jìn)一輛救護(hù)車?yán)?，我感覺(jué)就像在看一部慢動(dòng)作的無(wú)聲電影。我試圖搞清狀況。為什么他們要把她帶走呢？我的父親堅(jiān)信母親“瘋了”，并將她托付給了一家精神病院。我的母親一直都與眾不同。她不善交際，沒(méi)有朋友，也不喜歡被觸碰或是擁抱。多年以后，我終于懂得了父親對(duì)于母親不夠女人的評(píng)價(jià)。

三天之后，我們被允許探訪。二十世紀(jì)八十年代的英國(guó)精神科病房并非一個(gè)14歲的孩子該體驗(yàn)的地方，那里令我極度害怕和沮喪。母親見(jiàn)到我們很開(kāi)心?！拔易隽怂麄円笪易龅囊磺?，現(xiàn)在我可以回家了！”她大聲喊道。我永遠(yuǎn)都忘不了母親被拒絕時(shí)的神情。她的錯(cuò)誤便是大鬧了一場(chǎng)。她被拖走、灌藥，她真正的精神也一去不復(fù)返了。

之后的15年里，母親一直都在吃藥，因?yàn)獒t(yī)生試圖找到一種有效的藥物組合。其中一種組合使得母親精神錯(cuò)亂并從樓頂跳下。在經(jīng)歷了18期的休克療法之后，母親迷失在了自己的世界當(dāng)中。最終，在服用了醫(yī)生給她的一種毒性藥物組合之后，母親的生命悲劇收?qǐng)?。她終于得以從精神病院的折磨中解脫，而我則懷著對(duì)心理健康組織及專家們的深深恐懼逐漸長(zhǎng)大，而且我害怕自己也會(huì)患有精神分裂癥、躁郁癥或是妄想癥（就像他們誤診了我的母親一樣）。

我這一輩子都在努力融入社會(huì)。社交場(chǎng)合讓我不知所措，而眼神交流則令人痛苦。我被貼上“高傲自大”的標(biāo)簽，但事實(shí)是我只是不知道如何與人交談。我無(wú)法理解這個(gè)世界，而被關(guān)進(jìn)精神病院的恐懼一直困擾著我。

在二十世紀(jì)九十年代中期，我遇到了保羅，我現(xiàn)在的丈夫。他理解我（而我也理解他）。多年以后，一則關(guān)于托雷氏癥候群的廣告令我懷疑我們倆是不是有什么問(wèn)題?，F(xiàn)代科學(xué)技術(shù)意味著搜索此類訊息變得越來(lái)越容易，而后我很快意識(shí)到保羅有患上自閉癥的征兆，而許多的癥狀也向我鳴起警鐘。

先前“自閉癥”這個(gè)詞帶給我的印象是一個(gè)一聲不吭的人拍著手在墻角搖晃，完全與這個(gè)世界隔離。我從未意識(shí)到自閉癥會(huì)有這么多類別。我們花了許多天在網(wǎng)上搜索，從圖書(shū)館借閱書(shū)籍，甚至還觀看了一部名叫《莫扎特與鯨魚(yú)》的電影，電影講述了一對(duì)患有阿斯伯格綜合癥的夫妻，這對(duì)我們倆來(lái)講都像是經(jīng)歷了一場(chǎng)情感上的過(guò)山車。

一天晚上，保羅在做飯做了一半的時(shí)候崩潰了。這一切的絕對(duì)重負(fù)令他的雙腿不堪支撐。在某種程度上來(lái)說(shuō)，這就像是經(jīng)歷了悲痛的五個(gè)階段：難以置信、悲痛、憤怒、絕望和接受。我們都去看了心理醫(yī)生。保羅很快被診斷為阿斯伯格綜合癥，然而我最初卻被誤診為躁郁癥。我將要在一個(gè)精神病院里了卻余生，這激起了我的恐懼。我絕望地離開(kāi)了診所。當(dāng)時(shí)我還不知道患有自閉癥或是阿斯伯格綜合癥的婦女和少女時(shí)常被誤診為躁郁癥或是人格障礙。隨著時(shí)間的推移，保羅樂(lè)觀起來(lái)，最終自我理解，而我卻自覺(jué)在劫難逃。我沒(méi)想到自己會(huì)被誤診為躁郁癥。

六個(gè)月后，我們?nèi)タ戳肆硪粋€(gè)全科醫(yī)生。她快速地確認(rèn)我并未患有躁郁癥。她觀察了我與保羅之間的奇怪交流，然后把我轉(zhuǎn)給了一個(gè)精神科醫(yī)生。我被錄像，填寫問(wèn)卷，寫了一篇有關(guān)我童年的短文，并完成了閱讀及跟蹤測(cè)試，這些顯示，即使智商超過(guò)150的我，也有著一定的學(xué)習(xí)障礙。我最終的診斷結(jié)果是阿斯伯格綜合癥和注意力缺陷多動(dòng)障礙。

在測(cè)試的時(shí)候，我被告知，我的阿斯伯格綜合癥癥狀有所“不同”，而當(dāng)下，女性阿斯伯格綜合癥的診斷標(biāo)準(zhǔn)已現(xiàn)雛形。由托尼·阿特伍德教授設(shè)計(jì)的一項(xiàng)新的診斷工具極大地改進(jìn)了診斷過(guò)程，為婦女及少女們免去了因誤診而帶來(lái)的傷害。終于，我也接受了自我。我們都明白自己是怎樣一回事，這幾乎為我們的人格重新賦權(quán)。我們不再聽(tīng)從那些否定我們的人。更重要的是，我們?nèi)缃裼辛朔较蚺c目標(biāo)，我們的生活，與眾不同，卻絕非無(wú)足輕重。

巴布和保羅為了攝制一部新的紀(jì)錄片——《自閉已成人》，正著手一次長(zhǎng)達(dá)一年的環(huán)澳大利亞摩托騎行，該片將調(diào)查成人自閉癥患者所面臨的困難。