Journey of Self-Discovery

I've not always known that I was autistic. In fact, neither of my parents ever mentioned the word "autism", casting dark shadows of doubt regarding their awareness of the existence of the condition. As I grew up, I faced regular put downs because of my quirks. My father had an issue with my squeaky voice, which, in his typical  African society, was not a trait of an Alpha Male. 

Being the second of four sons, my father, struggled to make it in life, resorting to selling live chicken to pay his secondary school fees. He would carry a dozen young pullets in a steel cage with a wooden bottom on top of his head and walk miles, barefooted on the dusty, rocky african blazing ground, peddling them to make ends meet. His hard labour and unbroken focus culminated in his acceptance into the country's first and most prestigious university, a rewarding career as a geography teacher in a renowned school, his call to the Bar and his appointment as the country's ambassador to the United Nations, Pakistan and deputy High Commissioner to India.

My mother also expressed disapproval at many of my characteristics, such as locking myself inside my bedroom all day when I wasn't at school or uni, or when we had guests, not contributing to conversations, not making friends like everybody else, cracking my knuckles and sniffing my hands... She felt I was so selfish, over confident and egotistical that I felt I was better than everyone else so I didn't  like anyone apart from myself. I felt I was just the opposite but somehow I couldn't get the message across.

I tried my hardest to be like everybody else but the weight of wearing the Mask of Pretense and putting up an appearance in order to fit in drained up all my energies within a very short time.

 The first time I heard about autism was back in 2003. I was in my mid twenties and had just moved to London; there was a documentary on autism being aired on TV one evening. " You had this when you were young !", blurted my older sister, with whom I was lodging, as we watched the programme, featuring children in schools, engaging in solitary play, stimulatory and repetitive behaviour and having meltdowns in public places. "What makes you think so ?" I asked, defensively. She explained that she had previously watched a similar documentary and the children were reminiscent of my less -than-conventional behaviour in primary school.

It is true that  I went through my first 3 years of education in Africa without making a single friend. I experienced selective mutism,walked with a bizarre gait, earning me the moniker "Olumayn" ( Old man). I seemed to have my own mindset about how to make friends and it never dawned on me that my ideology would never work on planet Earth. At age 4, while my peers would play together, I was usually on my own, more captivated by the world of geology, gemology and petrology. Yes. Stones and rocks! They were my special interest. I  would pick up  pebbles, stones and small rocks and break them to see what was in them. I was fascinated by the quartz crystals that were found in the rocks and the spectrum of colours they displayed  when exposed to the ardent rays of the heartwarming tropical sun. Throughout my secondary school years, right down to my university days, I maintained strong elements of the "Triad of Impairments"; a set of criteria prescribed by Dr Lorna Wing which must be met as a minimum standard for a person to be diagnosed as "autistic".

Fast-forward, back to London, 2003. At the time, with my limited knowledge of autism, I found the suggestion that I had a condition quite insulting and after meeting a couple of autistic children later that year,one of which was the nephew of a very close friend, I concluded that I was definitely NOT autistic. He was  7 years of age, non-verbal, never made eye contact with me, and would climb all the way up to my head while singing some outlandish made-up tune as I sat on the sofa and sink his fangs into my shaved head!

Whenever I met someone who was said to be autistic, I would think " Oh no! Poor kid. Does he know he is autistic? Does he have any idea of what it's like to be normal? Does he feel he's missing out? I'd give anything to make him experience a normal life like me..." Little did I know that I didn't have the foggiest idea what it was like to be normal. My 'normal' was what researchers call 'autistic' and it sure felt great!

What then made me accept that I was on the spectrum? Well... Fast forward again to 2012, when I worked as the head of English as an Additional Language (EAL) in an all-boys secondary school in the heart of London. One of my students, who had just arrived from  Turkey, spoke with an odd prosody not consistent with the Turkish accent I was familiar with. He had an encyclopedic knowledge of  PC and mobile phone operating systems such as Linux/ Ubuntu, Android etc... on which he would speak for hours, irrespective of the engagement level of his listener. He was very intelligent. A gifted computer programmer aged 14. A geek in the typical sense....a geek without the glasses. English wasn't his problem because he was fluent, though he would often substitute the 'r' sound with 'w' when he spoke. But he underachieved in class and failed to form friendships. For years, I had referred him to the Special Educational Needs Coordinator (SENCO), who was adamant that he was my problem and my priority  and that because he was from abroad, his problem was definitely a language problem. Everyone seemed to side with the SENCO so I had no choice but to support this fluent English speaker with ...err..English.

My lightbulb moment came when someone suggested to me that he might have something called 'Asperger's syndrome'. I went on a quest to find out more about this syndrome so that I could support my student. As I delved into manuals  such as the DSM IV, the works of Tony Atwood, John Elder Robison and Simon Baron-Cohen, I had series upon series of OMG moments as I saw a reflection of myself in more than half the symptoms elaborated in those books. It would have seemed that Dr Tony Atwood knew me personally...or he was reading my mails: his book mirrored my life in such an unbelievably creepy manner. 

I subsequently took the online Aspie  test, scoring an overwhelming 156 out of 200: a 'Definitely an Aspie' score. Within days I had a new identity, and belonged to a new community. Following my discovery, I found out I wasn't the only one like me, as I always thought. There were thousands of people just like me all over the world, with similar life stories who found out in a similar fashion that they were on the spectrum. I felt I had solved a life long puzzle of who I was and why I was the way I was. The evidence was undeniable. 

After the initial shock of the discovery, I felt very proud of myself for having made it through life and education as an undiagnosed autist, without having recourse to any learning support services in school or uni. Looking back, I had become a graduate, a teacher at the helm of my department, a husband and a father. I had come a very long way independently without knowing that I needed support...

Then came sadness and anger at family and friends, preachers and parishioners and all those who talked me into feeling sorry for how I was. Armed with the knowledge that there was very little I could do to change anything about myself, I grieved for the wasted years I spent trying to be more talkative, outgoing and a ' people person', thus putting my strengths and talents on a hiatus.

Then came forgiveness...I forgave myself for not loving who I was because I used the outside world's standards as my personal measuring device. I also forgave all the people who had hurt me from my infancy to date through their words and actions, their rejections and exclusions... Just as I didn't know, they couldn't have known. There was a sense of peace that caressed my entire being from then. I would put in place a plan to tell them the news of my autism: To "come out" as an aspie. We will then all kiss and make up, they will apologise p, I will accept their apologies and we will all become friends...( that turned out to be one more trait of autism. I have no idea how people think and I still make the mistake of thinking that people are as  uncomplicated, simple and straight forward as myself. The result of my disclosure would be elaborated in another issue of this blog.)

Autism and Aspergers had quickly become my special interest and consequently, in a couple of weeks, I had learned more on one subject than I had in 4 years in Uni. Equipped with enough information and encouragement from forum users and a personal sense of conviction, I embarked on a long-winding labyrinthine  journey to obtain a formal diagnosis.

Oh, and I also learned one secret about my dad that he never knew about himself, which explains an awful lot about himself and myself. He had Asperger's all along...