Sometimes it is frustrating trying to explain to people what autism is and why my so-called special needs are not requests for preferential treatments but instead genuine and legitimate. The frustration stems from the challenges of overcoming the history of misunderstanding, ignorance or stereotype that people have of those with autism. Alas, I have been guilty of that myself.
My journey towards autism awareness and understanding can be divided broadly into three stages. Each stage is marked by several misconceptions that weren’t rectified until a later stage. I first suspected myself to have autism when I was 19-20 years old but did not seek an official diagnosis until my late 20s and it wasn’t another 4-5 years later that I became fully conscious of what autism really entailed. And even now, I dare not say I am fully aware of every aspect of the spectrum or proclaim myself to be an expert because it affects individuals in different ways although people with autism do share some common characteristics.
In my teenage years
I first suspected I have autism when I was 19-20 years old. I remembered talking to a psychologist about karma and described that I found it hard to sympathise with people who happened to find themselves in a bad situation beyond their control because I believed to a certain extent that people reap what they sow. At this point, the psychologist mentioned the word “autism”. While she didn’t say autistic individuals lacked empathy, the fact that it was indicative of autism shaped my initial impression of autism being related to a lack of empathy.
#1 PEOPLE WITH AUTISM DO NOT LACK EMPATHY
The misconception that autism reflects a lack of empathy is to certain extent a result of the unfortunate choice of words. People with autism do not lack empathy per se, rather, they have difficulty reading the minds and interpreting what others are thinking. Some individuals and theory such as the Intense World Theory go further to argue that people with autism struggle with too much empathy.
In my late 20s
I didn’t seek an official diagnosis until my late 20s and the circumstances that prompted me to do so was purely to satisfy my curiosity and to confirm the suspicion I have harboured for a decade or so. I didn’t seek out a diagnosis earlier because I didn’t think there was a need to. After all, I was already on my way to university and although I wasn’t exceptional in terms of grades and achievements, I considered myself average or along the border-line, capable of taking care of myself and did not require any extra school or social support to get me through. If being autistic means the lack of social skills and living in a world of my own, I’m fine as long as I don’t have to deal with hoardes of people at work and respond to social demands. This was the primary reason why I didn’t feel the need to seek out a diagnosis. At this stage, I was also harbouring the misconception that being autistic meant a preference to be alone and anti-social. And I’m almost ashamed to admit that it wasn’t until recent years I came to realise that not everyone on the spectrum are like me and prefer to be alone. On the contrary, people on the spectrum can be sociable and even crave social relationships. In fact, I don’t even think “anti-social” is the right word as that connotes misbehaviour or even criminal conduct. When I say “anti-social”, what I actually mean is I prefer to keep to myself and do not warm up to people easily. Nevertheless, the sociable autistic versus the not-so-sociable autistic is a good example of the two opposite ends and character of someone on the spectrum.
#2 PEOPLE WITH AUTISM CAN BE SOCIABLE TOO (ALBEIT AWKWARDLY)
I was prompted to seek out a diagnosis to satisfy my curiosity. I wanted to hear from a specialist in the field as to whether s/he thought I was on the spectrum. At this stage, I suspected I might be on the spectrum. However, I wasn’t entirely sure because I was also missing some of what I thought were key or major characteristics of autism. First, I am a female which supposedly meant that I am much less likely to have autism, which was thought to be a male syndrome. Second, I am terrible at maths. People with autism are thought to be genius at maths and science. Third, I don’t really have a special interest. People with autism are ‘supposed’ to have a special interest and be really good at it. Following my diagnosis, I realised that these three characteristics which I thought were essential to a diagnosis of autism were actually just other misconceptions that I had held and which were based on stereotypes that the media has portrayed of people with autism.
#3 AUTISM PRESENTS DIFFERENTLY IN GIRLS
#4 THE LACK OF SPECIAL INTEREST DOES NOT PRECLUDE A DIAGNOSIS OF AUTISM
You don’t need to have a special interest or be a genius at maths or numeric figures to be autistic.
Early 30s and ongoing
Despite getting a diagnosis, I still wasn’t conscious of what it meant to be autistic. Given I sought out a diagnosis to satisfy my curiosity as opposed to because I was running into problems, I didn’t seek to understand the condition better. To me, autism remained largely synonymous with being non-sociable and didn’t have any significant implications beyond having poor social skills, which I was happy to live without. To this extent, it really didn’t matter whether or not I was autistic. It wasn’t until 2-3 years ago that I became aware of the true extent of autism and what it entailed. To briefly describe the circumstances that contributed to my understanding of autism, I was enrolled in a research degree program and running into trouble with my thesis including time management and formulating my argument. On top of that, I was having problems with residential noise issues (I still am) which caused me a great deal of distress. I was easily distracted by noise and couldn’t concentrate on my work. I was very disappointed with myself because I was failing at something I was supposed to be good at or something I thought I was good at. It was the realisation or rather the time has come for me to admit that I have been avoiding making decisions about my career and future (including the realisation that I have to get out of Hong Kong but have not got a contingency plan) and I need to start taking action to put the situation right. Realising that I need to find a career of my interest, or in other words, my purpose in life, I returned to my interest in the study of human behaviour. I started to read extensively about autism and Asperger, from the words of specialists and people on the spectrum. For the first time, it occurred to me that autism is not simply a condition that affects an individual’s social skills. Given I have always viewed autism as merely a condition which affects my social behaviour, it was a revelation to read that it is associated with poor executive functioning and sensory sensitivities. I have felt bad for getting distracted easily by external stimuli but suddenly, everything makes sense. Autism is not defined by whether or not an individual is or is not sociable. It comes in a package of symptoms and characteristics that manifest in individuals in a variety of ways.
#5 AUTISM IS ASSOCIATED WITH POOR EXECUTIVE FUNCTION
#6 AUTISM IS ASSOCIATED WITH HYPER- / HYPO- SENSITIVITY TO SENSORY INPUT
Pros and cons of diagnosis (or more accurately, the pros and cons of grasping the true nature of autism diagnosis)
This is not going to be a comprehensive list of pros and cons. My experience illustrates that suspecting yourself to be autistic and getting a diagnosis do not necessarily equate with acquiring the knowledge, awareness and understanding of autism. Therefore, from my perspective, the first and foremost priority is to understand what autism actually entails. In this respect, Professor Tony Attwood’s The Complete Guide to Asperger’s Syndrome plays an important role in increasing my understanding of Asperger to such extent I honestly believes he knows me best, and ultimately, the book has provided a useful foundation to help understand myself better. With the benefit of hindsight, if I have done my reading earlier and know that autism is associated with poor executive functioning, I would not trick myself into believing that I can do anything so long as I’m determined enough. Yes, if there is a will, there is a way but in order to fully utilise the will, I first need to understand what my strengths and weaknesses are. Now that I know I am weak at structuring and time management due to autism (as opposed to merely a lack of determination or laziness), I would take extra efforts to schedule my timetable and make visual reminders to myself.
On the other hand, knowing that there is a reason behind my sensory sensitivities, I try to avoid situations that trigger my sensitivity. The downside of this is that I am now ever more aware and sensitive of my sensory experiences to such extent I sometimes wonder if I intentionally notice sounds or seek sensory experiences to prove that I am indeed sensitive and starting to use it as an excuse to avoid unpleasant sensory situations.