Need for Official Acknowledgement
Perhaps only the people (especially the adults) on the autism spectrum could understand the importance of an official diagnosis. No matter how certain are we about our traits matching the described symptoms of being on the spectrum; despite the tons of ‘reliable’ online tests we have taken (and continue to take*) to validate our suspicion, we will never be 100% satisfied on our personal (intensive) researches and findings. We will always need solid proof, and official acknowledgement and recognition. We cannot leave things to chances.
* The reason that we continue to take more tests is because no amount of self-diagnosis can fully satisfy our need; possibly from years of ‘accusations’ that we overanalyse matters, and other prevailing aspects.
Struggle to Make Peace
Growing up, I was often asked, ‘Do you always need proof’? Yes, I did. I still do, but remember that I have been heavily conditioned to suppress my autistic traits, so that I can try to pretend to be normal; so I have formulated an automated cognitive response to hammer down the urge to demand for proof and moderate the acceptance level.
However, for something as huge (it’s super huge for us) as a lifetime suspicion, the nagging need to be officially diagnosed is extremely difficult to dismiss. So, I definitely get it. For those who are still under the group of ‘self-diagnosed’, I understand that it’s a daily (if not every waking moment) struggle to make peace with ourselves for not having an official diagnosis.
The Emotional Phases
Stage of Anticipation
It usually takes a life crisis for an adult suspected to be on the spectrum to take the plunge and seek for a professional diagnosis. One of the things that is most crippling is that we fail to comprehend the ‘normal’ logic of life, especially those that evolves around relationship with other people.
We ALWAYS need answers, always. It will come a point in life that we can no longer accept others leaving us for reasons such as, ‘You are anti-social’, ‘You are impossible to understand’, ‘You are too weird’, ‘You are too different’, and the killer punch, ‘Why can’t you be like everyone else?’. When our world – that is different from this alien world – starts to fall apart, we scramble around to find our foothold and frantically try to find the answer to why we are so different from everyone else despite the tremendous effort to be same.
At least for me, this is the primary reason why the diagnosis is of paramount importance.
I asked around from acquaintances practicing in the helping industry, and my lecturers when I was doing my foundation year for psychology studies. I needed to confirm my self-diagnosis. I went through loops of bureaucratic requirements in order to get a referral to consult with the specialist at subsidised rate.
The anticipation began. Would it be a confirmation bias? Would it be impossible to diagnose an adult for Asperger’s Syndrome? Would the psychiatrist be trained enough for autism diagnosis? Was I imagining a condition? What would I do after the diagnosis? Would I finally get an answer to most of the social trip ups? Would I be satisfied with the diagnosis?
The exceptionally long wait for an appointment and delayed duration of diagnosis induced a high level of stress and anxiety.
Stage of Surprise
Diagnosing an adult for autism is a more complex process, as we would have coped and ‘faded’ the traits. I satisfied two out of three components of the diagnostic guide. The last component required another person – preferably a parent or guardian who cared for me when I was a child – to provide testimony, of my childhood behaviors that were different from other children.
I was surprised to hear my mother citing the ‘eccentric’ incidents from my childhood. I would probably never mention those incidents because they were normal to me. Remember this, our autistic traits are most prominently exhibited when we were still children; when we had not developed coping mechanism to conceal our traits. Most importantly, we did not know that we were doing the ‘not normal’ things; they were absolutely normal to us until someone told us not to do the ‘weird’ stuffs.
One incident that stood out was one that my mother had retold many times. She told that I was a difficult baby, and I never outgrew that. I was always crying, there was nothing they could do to quiet or calm me.
As a toddler, I was quite a brat. She highlighted to the psychiatrist that I was such a difficult child and seemed bent on making her life miserable. My mother had a Singer brand sewing machine. She accepted adhoc consignment jobs in sewing clothes for factories. Whenever she started paddling on the step mechanism of the sewing machine, I started to cry. I stopped when she stopped. Her exact words were, ‘She was so bratty! When I started to paddle on the machine, she started to cry. When I stopped and looked at her, she stopped crying. She was happy when I did nothing and just looked at her! Tell me she was not weird!’.
I was probably just 3 years old. I still remember vividly of the scenario.
We could now explain my ‘bratty’ behaviours. I was not seeking for attention at all. Sounds are of the same level for many autistic children, in many cases, the volume is amplified; it could still be, but we have developed coping mechanism to filter out and forcibly drown some background noises so that we could try to focus on some sounds. The sound of a working sewing machine could be deafening in my ears, I was uncomfortable, if not in pain.
- The Gap from Truth
Here, we can also observe the distance between a speculative conclusion of my mother and the truth. She focused on the fact that I was happy when she looked at me. She assumed that I was like other children, who was happy after she got what she wanted – mother’s attention.
The truth may be that I didn’t care about her attention. She could be looking at the unfinished clothes, and I wouldn’t care. What stopped my crying was most likely to be the reinstated quietness.
Stage of Euphoria
With my mother’s testimony, I satisfied all criteria of the diagnosis. I am officially diagnosed to have Asperger’s Syndrome.
It was euphoric! I embarked on the journey (like many other Aspies* who are diagnosed) of telling everyone in my life (past and present) of my diagnosis. I don’t know about other Aspies, but personally, I am as intelligent as I am stupid. I must have an intelligence index of above average because I am self-taught in many complex skills without any formal or informal training. I must be equally stupid because I fail to develop effectively, the theory of mind, despite the many years of fierce attempts to learn.
My sole objective of sharing with everyone was to share the ‘confirmation’ of my suspicion. I was trying to provide an answer to everyone why I am different. I thought they would share my euphoric joy of ‘Now we know!’ moment.
It turns out, unlike the Aspies or Auties*, the NTs* do not strive for truth. By (over)sharing, we exposed our vulnerability and still not being understood. Most people aren’t comfortable with truth; we are uncomfortable with lies. I can understand from their standpoint though. Although I was only sharing my joy, it could come off as reopening old cases of wrongful accusations and slap them down with a disorder. It’s as if I was saying, ‘You had accused me wrongfully all this time, I was weird and did all the strange things because I am autistic!’. It can evoke guilt and perhaps shame, and people don’t react well to such negative emotions and they do what they do best, cut us off, again. It’s probably not intentional, but it’s the normal human nature.
Remember, this is not about blame assigning. This is to illuminate the different thought processes which often is the key reason to misunderstanding.
* Aspies – general term used by people with Asperger’s Syndrome to call themselves
* Auties – refers to people with autism
* NT – Neurotypical – anyone who does not have atypical neurology
Stage of Realisation – The Dip
After noticing that a group of friends had left the room after I made the announcement of my diagnosis and possibly my ramblings about all the dots that I am connecting, I decide it’s wiser to seek out other Aspies to share the news with. They would understand.
Then, a phase of ‘getting used’ to the shiny new tiara on the head passed.
When the euphoria is wearing off, it comes the phase of realisation – the dip!
It’s brutal if you were unprepared. I was and still am unprepared for this. I thought that was it. I have the diagnosis, it provided me with a long list of answers to most of the questions I had been asking for as long as I could remember.
The real question is… So, what next? What comes next after that?
The thing about formal diagnosis is that the second that we get that ‘certification’, we let the guard down, and cut ourselves the slack – stopping the exhausting cognitive conditioning work to make us normal. It’s like taking off that shade that never suit us well, and we start to see more clearly the difference and existence of our concealed autistic traits.
It may seem exciting to uncover and rediscover ourselves. What comes after this is a electrifying shock – one that can be crippling or epiphanic!
I am beginning to be able to identify my autistic traits more easily. My awareness is heightened and unshielded. It also means this.. I have been living a fraudulent lifestyle! I have been using every ounce of my mental resources for the past many years to learn to be normal. The diagnosis really means that I can NEVER EVER achieve that one goal that I spent my lifetime trying to reach.
There is no going back to unautistic. Of course, it has never been an option, but before a diagnosis, I would still painstakingly punish myself when I fail to meet the ‘standard’ requirement to be a ‘standard’ person based on ‘standard’ benchmark. I would constantly try to console myself when I failed miserably in socializing, and motivate myself to do better the next time. Each failure shred a piece of my soul, but I strived on.
I was in a crippling shock with the realisation. It leaves me with one logical option – give up trying so extremely hard.
It’s not easy. Giving up is not in my nature; but when you come face to face with a clean truth, there is no need to fight anymore. Coming terms with this is enough to push my anxiety level to a rocketing high. For a while, I couldn’t read any article that are related to autism. I struggled with conflicting emotions.
This, is what I have not been prepared for – the repercussions.
The Monster Named Anxiety
There is a monster named Anxiety. He is determined to be my BFF. I don’t like him, because he is pushy and cruel; I shut him out at the door every time, but he is formidable. He climbs through the window that I forget to shut; he squeezes through the cracks in the wall; he tries everything he could to get to me, and with him, I am completely powerless.
Most of the Aspies have this unwelcoming friend. It’s no surprise, because when you feel like you are living in an alien planet, where the logic formed by the majority doesn’t fit yours, there are more questions than answers; and you know how we react to questions!
Fundamentally, this monster has picked us out since we were children. We didn’t play with other children, we didn’t understand what were expected of us, and we slipped up all the time. Did I tell you that Anxiety has a close relative named Misunderstanding? We have been misunderstood throughout our lives. We do our best, and try every different method to make ourselves understood*, but the effort is futile. With misunderstanding, comes anxiety, because we have developed phobia of making mistakes.
* I believe that is one of the contributing factors that we always explain in length, and include too many metaphors, as though repeating ourselves (although in our mind, we were saying them in different ways), because we never know if we had made ourselves clear. The older we grow, the more lengthy our explanation becomes, because we would have accumulated more misunderstandings along the way to affirm that our simplest understanding is too complicated and difficult for people to understand.
Clever Stupid Aspie
I studied just fine, if not better than the average students.
There are three teachers in my life that made a huge difference to my life.
1. Mr Goh – Primary One Form Teacher – The Wise One
It’s possible that he had spotted my autistic traits since the beginning of the school term. He took time and patience to encourage me to talk and ask for permission to visit the toilet. He took extra effort to arrange to meet with my mother to give his sincerest advice to place me in a class below my intellectual ability. He recognised that I was very intelligent, but I was apprehensive in social situation as I didn’t have any friend except for one girl friend. I was a straight A student, yet I exhibited great difficulties in verbal expression.
2. Mr Chan – Secondary Three Form Teacher – The Protective One
Teenage years were brutal for people on the spectrum, because self-identities are formed during those years mainly based on social intelligence. I was becoming rebellious. Friendships were confusing (still are) and difficult to manage. It was harder when children stopped being innocent and started to be untruthful.
Mr Chan pulled me aside in one of my misbehaved incidents. He said very gently, ‘You are very intelligent, if you could just focus on your studies instead of the relationships with your classmates, I am sure you will excel.’. I was convinced that I was stupid, so that was quite a refreshing advice. I thanked him and told him that he was wrong that I was intelligent.
He allowed me to stay in the A.V.A club that he was in-charged of. We needed at least one E.C.A (extra curriculum activity) to graduate. I was not required to attend any of the meetings or perform any duties. I only pretended to be a member when I wanted to get away from some classes.
By this time, the social expectations of me were becoming overwhelming. I was heavily taxed in dealing with all sorts of confusing relationships. Teenage years were the years when deceits, mistrust, bully, selfishness and many other ugly aspects of human cracked open the shell of innocence and barged in.
Despite the protective shield. The bigger question impended if I should follow the mainstream or to take a different and unpopular alley to take a slower stroll.
3. Miss Azizah – Secondary Five Form Teacher – The Inspiring One
I struggled throughout my secondary school years. Suicide rates are most prevalent amongst people on the spectrum from adolescent to adulthood years.
At 16 years old, I promised to gift my remaining lifetime of what may be left after 18 years old, to a friend who wished for longevity. That was when I had reached one of my many burnt outs, and wanted nothing more to do with this world that has no place for me to fit in comfortably. Unfortunately, such wishful wish didn’t come true. I didn’t die, so I guess the friend just have to make the best of his life.
At 17 years old, I wrote an unmarked article, titled ‘Life’. It was heavily flavoured with melancholic ingredients, questioning into the purpose of life and living. I expressed explicitly of the exhaustion of living. The teacher refused to mark it and said that she could find no error, but she was saddened by the poetic yet heavy words used in the article. The article was circulated in the class.
I was mostly utterly disappointed with people during that few years. I was involved in unimaginable situations that I didn’t choose to be involved in. I found myself caught in the middle of many disputes that didn’t concern me, at all. I started to fight for the underdogs. I found myself helping to mediate a criminal case, whereby self-serving deceits blurred the line between rape and disgruntled girl. I found myself involved in dramatic situations whereby strange girls (who would probably have considered me strange) threatened to have me bashed up for something I didn’t do, didn’t intend to do, or didn’t even know.
The last year of secondary school was too challenging. After preliminary papers, I went to the principal’s office and told him that I won’t be going to school anymore. I failed to see the purpose of going to the school where I was emotionally wrecked by the people in school, just to revise for the final exams. He gave me the green light. I only returned to school during selective examination dates – I only sat for 5 papers.
Now, about Miss Azizah. If there were past life and karma, I must have had done something good to deserve such an enthusiastic teacher in my condemning year.
It was an important year if I even wanted to pursue a higher education later in my life. She was not just the form teacher, but also the English language teacher. We were taught poorly in public schools back then, so our foundation in the English language was weak. Even till now, I am never certain if I have gotten the tenses or the rules of usage correctly. That was never corrected; but, she helped to open a way for me to understand English as it is, concise and precise.
Aspie learns better with clear instruction and non-ambiguous rules; well, that’s why we can never pick up social cues because of the high level of ambiguity!
I am certain that I would have failed my English – despite scoring an A for English in N’Levels (it’s really easy to pass N’Levels because of the much lenient marking rubric) – if not of the relentless teacher who refused to give up on us.
The Mentor and Confidante – Sounding Board
It took nearly 4 months before my diagnosis is made. When I entered the stage of euphoria, I started to talk and write intensively on the subject of self-rediscovery. I was reconnecting all the dots, and my head was boggling to near explosive.
I had been telling people that I was on the very mild end of the spectrum. It was not an intent to make-believe. I truly believed that. See, I had not met another Aspie in my life, I had no comparison, to begin with. I assumed a negative correlation between my level of severity in autism (yeah, and also, there is no rating of severity in my diagnosis) with the level of functionality of my being. The higher functioning I am, the less autistic I should be.
Then, I started to meet more Aspies. They seemed more severe than I! I felt I functioned better, I was certain that by now I could conceal my asperger’s traits more efficiently. No one could tell I am different! (Now that I think of it, whenever I tell people that I was only mildly autistic, that I am a superbly high functioning person on the spectrum, they didn’t usually respond; as though they didn’t fully concur with me yet obligated to play nice.)
One of them told me that he could spot many similarities between the two of us. I didn’t think much of it until recently. He is diagnosed with Asperger’s Syndrome, and classified as severe. He is like my sounding board. After the stage of realisation – the dip, my traits are unfolding before my eyes, more rapidly and clearly. I am like him! I could point out his traits, but I couldn’t see my own. He has been expecting me to experience this stage, right from the beginning. I could almost sniff the smug on his face every time I had to say, ‘I am just like you!’. I am more autistic than I had thought.
My high functioning ‘skills’ may have something to do with the environment (Singapore doesn’t provide an endearing environment for disorders, of any sorts; and public awareness is relatively low as compared to other developed countries), intelligence, and other factors.
Anecdotally, I conclude that the level of functionality as a ‘normal’ person is not a good benchmark for level of severity in autism.
- Correlation Between Severity and Intervals of Burnt Out
I am however, exploring into the correlation between the severity of autism and intervals of burnt out. I thought I was coping better than most Aspies. I did, because I didn’t go out. If, however, I shift the timeline to before I was working from home. It revealed a very different scenario.
When I had to go out and meet people, I usually suffered a downtime for a few days afterward. It had always been like that; that’s why it’s very demanding to have a tight schedule for social events. The more tightly the social activities are scheduled, the more downtime I have to pay back after that.
When I was working in a corporate environment, I didn’t go out on weekends. It was extremely demanding to have to go out after work. I experienced high volume and frequency of burnt out and shutdown.
I couldn’t hold a job for a long time. The longest employment was three years, during which, I was taken ill every week – I suspect to be psychosomatic. I always had a shutdown period between employment, because it was just too much, and I knew I will not function properly if I had to return to the workforce immediately. Each shutdown lasted for half a year to 1.5 years. My mother had always knew I suffered tremendously with working for/with others. She had never urged me to find a job. My real reason to leave the employment was almost always about the difficulty with a person or some people. Work was never difficult, I was always able to excel in performance in any job I held – that was one of the problems that caused a difficult working relationship with others.
My burnt out rate has always been high. I just didn’t take those into account before concluding that I was only mildly autistic.
My final burnt out? I have been working from home since 2006; but when I have to go out, I needed to rest for a few days afterward. So, I have never become better, I applied the only effective solution – minimise stimulus that causes the burnt out.
* On the side: Burnt out rate can also be correlated with level of intelligence, which result in over-compensation, hence the mental exhaustion.
Self-study Is Easier
Self-study has always been easier for me. I failed to comprehend the exclamation of peers towards my ‘self-discipline’ and ‘determination’. Well, now we know why. I am rigid, I need some form of routine, hence the self-discipline. I am obsessed with finishing tasks, and uncompleted tasks just drive me crazy, hence the determination.
I have been told many times that people admire my effort in furthering studies – I am doing a degree in psychology. Know this, it is not the easiest thing to do. If I were able to do it online or from home, I would do it much better, if not distinctively excellent.
Studying as an adult who has to pay all the bills in the household and put food on the table, is challenging for anyone. It is undoubtedly more challenging for people on the spectrum. I am not just having to deal with all the challenges that you have to; I have to deal with my sensory overloads while in class.
I am always seated in the first row of the class. It is one of the ways to de-distract myself from observing what everyone else was doing because I pick up the smallest details such as subtle movements, in order pay attention in class. Some sounds are intolerable to me, some scents are unbearable to me, some colours give me a migraine. Group discussion is a sure trigger for anxiety because I have to talk to others and that means I may offend people without knowing. It’s an embedded phobia.
I am not ashamed that I am taking medication to deal with the anxiety. If that is the only way for me to get an education that I am keenly interested in, so be it. It’s important that people don’t tell me that everyone is anxious about the presentation, because it is NOT the same. It’s not fear of public speaking (oh well, I am not great at that too!) but the need to mingle and thread carefully with the delicate social situations – every social situation is delicate, in case you wondered.
For those people who had taken tons of online tests to test your aspieness, and get a ‘most likely an aspie’ result. Be mindful of the various stages that you will be going through emotionally. They may not be the same as mine, but just be ready.
After-diagnosis-care is nearly non-existent here, or at least not an important component in the institute that I am consulting with. It may be helpful to build your own support circle (I know, it’s not easy, since we probably only want support from people who can truly understand) before you go for the diagnosis. Constantly touch base with this group of people so that you can secure a foothold when/if the waves of emotional upheaval take you by surprise.
This is just my personal experience, but I am rather sure that many other Aspies have gone through some stages of emotional shifts since the diagnosis.
The mentor plays an important role in my life. He has his limitations and challenges, so he may not always be there for me when he is dealing with his own issues. However, we are each other’s cornerstone in maintaining some form of sanity, especially when we are overloaded.