Open Mic

So today is Sunday. I got to church in the evening only to learn that there would be an open mic session after church. I usually stress a lot after church when the comforting structure of music-sermon-prayer is stripped away and I'm required to ad lib through an unpredictable meander of social interaction. Groups form all around me and I'm unable to hold to one train of though due to the rumbling sound of  all the conversations sending me into sensory overload. When I was on my antidepressant drug, I could take it all in. It didn't make me the bubbly extrovert I wanted to be but at least, whilst on it, I didn't have the urge to flee from social situations.

I knew I would stay for a short while and leave at my usual time. Immediately after the closing prayer, I shot out to secure a place in the lounge. I found an armchair right next to the stage and I threw myself in it. On second thought, I stood up and moved away in case the armchair was reserved for the church leader or an equally important person. Instead, I sat on a large sofa in the middle of the room. But then, the thought of being squashed by people when the room becomes fully packed compelled me to relocate comfortably in a cozy corner next to a derelict electric piano on whose keys I stimmed frantically to regulate myself emotionally.

One bubbly lady whose name I haven't quite grasped came towards me. "You're so quiet!" I managed to hear her say amidst the brouhaha as the place gradually got noisier. An aura of anger rose steadily inside of me. I had to suppress it before saying anything for fear of spiralling into an uncontrollable meltdown. I closed my eyes, breathed in deeply. I wouldn't have gotten into this state if that was the first time I'd had this sort of conversation. But it wasn't. One reason I avoid social groups is that I always get to the place where people judge me based on my inability to 'gel' with others, and they often ask me publicly 'why are you too quiet?'

" Is that a problem?" I managed to ask slowly and as politely as I could. One wrong move and this woman might find herself paying for all the hundreds of people who had previously dragged me into this depressing conversation and left me anguishing in low self esteem. She answered wisely by saying that she wasn't bothered, told me she used to live around my area and asked me if I wanted to perform something during the open mic.

It wasn't something that I had planned but it could be for me that one moment that reveals to the world the treasures in people that doesn't show in their outward appearance. It could be my Susan Boyle moment, my Paul Potts moment... Or more appropriately, my David and Goliath Moment. I said "ok". And the adrenalin rushed in.

I haven't attended the First Baptist Church for long. Just under a year. Having had a vast experience of leading congregations in worship, I wanted to join a church where I could help with leading, playing the guitar and co writing songs with other musicians. Unfortunately, previous experiences had shaped my thinking such that I had now become scared of people because I could never tell their intentions. After overcoming my reservations, I had agreed to speak to one of the leaders regarding my desire to join the music team. He took my email and said he would create a login where I could find all the song sheets and the duty rota for each Sunday. I never heard from him in that regard. Months later, resigning to the fact that I had been forgotten, I would pick the guitar after church and quietly sing to myself. No one ever took notice of me. One day someone did. The lead pastor. He spoke to one of his leaders to get me on the team. Again, my details were taken, I was briefed about the login and I faced an anxious wait, occasionally bringing my acoustic guitar to their rehearsals and playing awkwardly alongside them from the back of the room...until one day this same leader approached me (I was so excited, it felt like ' FINALLY') then he continued: " We would like you to operate the lights for us while we sing on stage..." I smiled and maintained my decorum but he had killed something in me and I struggle to look at him in the face ever since.

 Back to the noisy room, the woman called one of the organisers called James to tell him I would be performing . James is a leader in the church as well. He had a guitar and asked me what song I would be playing because they needed to know which song so that as soon is I took the stage I would be ready to go. After a brief hesitation, I told him the title of my song. " It's a worship song" I exclaimed. James' face changed. I couldn't read the expression but I trust my senses that there was a significant change followed by a disturbing silence. I thought" is a worship song not appropriate for a church open mic session? Had the congregation had enough of religious songs for the night? I would have sang something else if I knew how to. But contemporary worship was all I knew and all I listened to. It was my special interest and my obsession.

This was my first open mic ever so I was absolutely clueless about the unspoken social rules that governed the event.

People would climb the stage and sing popular songs that everybody knew, except me. There were loud garage raps and R&B songs and everyone seemed happy.

In the meantime, I was a nervous wreck. I hadn't sang publicly for almost 2 years. I was worried about the key in which I would be singing. I even asked for a capo. Will I get the right balance between the high and low notes? I found a perfect key and I had to hum it throughout before I forgot it... Unfortunately, I had a moment of distraction and out of my mind went  the key.

The more I heard people sing the less I felt daunted. But I still suffered from high levels of anxiety characterised by an intense headache, hammering at my temples, extreme nausea and butterflies in my tummy. I didn't find it funny at all.

What if I forgot the words of the song? For the umpteenth time, I brought out my phone and tried to decipher, in the poorly lit bar that doubled as a church lounge on Sundays, the lyrics of the song which had previously been second nature to me...

After each singer, I would anticipate the sound of my name. My heart would skip a beat, then trod on frantically, nausea would rise and I would stim some more on the mute piano until a name is called. By this time it was long past my regular home time but I was staying late uniquely because this seemed to be the last chance I would ever have to communicate to them what I could really do; it was now becoming obvious to me that being in my late 30's, bespectacled, slightly balding and carrying some bulging baggage around the middle area, I didn't look like one of the "in " crowd anymore. I had to really demonstrate an outstanding level of musical acumen for me to be welcomed into this team of young and attractive people.

My heart pounded throughout the session. People had started leaving. I would have left if I wasn't singing. I stayed and waited, song after song, minute after crushing minute... Until the MC announced "And now for the finale!!!" That's me, I thought! I felt sick... For me, the threat of failure is as horrible  and as intense as the prospect of success. The only difference is that the fruit of success is more palatable to the heart and to the self esteem. 

As I encouraged myself by saying " This is your time to finally shine", another name was mentioned and my heart sank, free-falling into an abysmal place of melancholic misery.

" How could this happen?" I thought to myself with utter disbelief? I would have cried if I could. I had been through a period of high anxiety only to plummet into deep depression in such a short period of time.

The lucky person who got to have the mic was the rapper who had first opened the floor. This time, his rap had the name of the church in it and the audience was required to participate in a call and response. After a while I couldn't hear anything...the place went quiet, except for the dancing and raising of hands. All I could hear was my heart beat, and a loud ringing in my ears. I felt like there was fire in my belly. I wanted to scream. I wanted to throw up. I knew I'd had enough and it was time for me to move on.

As I stood up, I saw James. I avoided his gaze, picked up my bag and coat and made my way out, confronting the  confluence of the congregation and finally making it to the open air. The indoor-outdoor transition wasn't really thought through so it hit me like a blow. The cold wind. The noise of cars. I felt a deep sadness.I was gutted, disgusted sick and tired of life. I felt I had overstayed my welcome in church and on Earth. I wish I was still on my medication. On them, I could handle disappointments without a thought. Without them, I faced days and weeks of my brain replaying this excruciating event. I wanted to cry it all out but I couldn't. I felt very embarrassed, wondering how I was ever going to get all this behind me. Wondering how I could survive in church after this experience.

As I made my way to the underground train station, I thought of how I'd lost all my spoons to that open mic session and I asked myself how on earth would I find strength to navigate through the week. I felt drained. I wished I could have the week off to recover. As I stood on the platform, I spotted a group of people from the church. Two of them had sang a duet during the session. I didn't need a reminder of the nights events so I moved away from them to the other end of the platform as I thought to myself: " since I can't cry or share this with anybody, I know an ideal way to digest these pent up feelings... I'll just write it in my blog. I just might feel more relieved..."

To disclose or not to disclose

Upon learning that I had Asperger's, I thought to myself: ' I now understand myself and why I act and respond the way I do. Now all I need to do is to let everyone know so that they won't judge me by what they see but rather with an understanding of the reasons behind my response to my environment. They would stop thinking that I'm a bad, cold and unfriendly person simply because I have very little facial expressions and struggle to generate small talk. Now where do I start?"

I started with my sister, showing her the results of my Aspie test, then to two people I call my best friends. The response was rather positive, though one of the best friends was a little bit skeptical about my disclosure due to our friendship being limited to occasional texting and not seeing much of me in real life to assess my autistic traits first hand.

 It was at that time I decided to leave my post in the secondary school to pursue a Masters degree in Social Work. I emailed my former lecturer, Helen, for a reference and she willingly provided one. We got into a discussion on why I wanted to leave teaching. Having previously confided in myself and her small group of students that she was coeliac, I felt I owed it to her to open up as well and trust her with my issues. I spilled the beans on a lot of issues that was making my current work increasingly unbearable and ended by disclosing to her that I' ve just found out I'd been living with autism all my life. To my utmost surprise and dismay, that was the last I  ever heard from Helen. It's been 2 and a half years since that email.

Another person I spoke to was the Minister at the church which I attended at the time. Church for me was an intense social struggle. The hardest part for me was when we had to "turn to your five and shake them by the hand and interact with them. I always found myself alone with everybody quickly getting into pairs and I being the only odd one out. Though I was an adept musician and a passionate worship leader I made no friends in the church except for one person... And the children who were not hard to please and accepted me the way I was. The response I was getting from the congregation made it uneasy for me to continue my regular role as a song leader so I asked for permission to take a sabbatical leave. 

I felt that if the minister understood me, he could help the congregation to understand autism. Wrong.

I held the meeting with the Reverend minister on a Friday to tell him I had  a form of autism that made certain social situations and social places such as church very difficult to deal with. I felt that is would provide a perfect explanation for all the traits they had seen in me. Being unable to read his intentions due to mind blindness, I took his words to assume that this revelation was a huge learning curve  for him for which he was very grateful and that he would do some more research on it to be able to educate the congregation and to make some accommodations for me.

On Sunday, I learned that I had been officially ousted from the worship music team and the one person who was my only friend in the church had not only endorsed my sacking but had also been awarded a position of prominence in the  team and for a year, I painfully watched him do what I was meant to be doing. It felt like the highest form of betrayal. Like your best friend going out with your ex who dumped you and still expecting the friendship to remain the same.

I wanted to leave the church and put behind me all the hurt and discouragement I had endured but I was scared it would fuel more rumours and gossip. I felt all eyes were on me so I tried to act all happy during the singing sessions to avoid entertaining the many people who were eagerly anticipating this unfriendly jilted church singer to break down and cry.

I had mixed responses from friends and family. One amazing family member confessed to me that my struggle was similar to theirs and upon taking my advice, they had taken the Autism Quotient test and had an equally high score. Others appeared supportive as soon as I made the disclosure, then they slowly teleported themselves out of my life.
Here are a few disappointing responses I got :
"...stop making excuses for being unfriendly and unsociable."
"...you have to make an effort!"
"You have to discipline yourself!"
" I'm a spiritual person. This aspergers thing doesn't sit well in my spirit..."

On the other hand, disclosures are not all negative. After contacting the National Autistic Society for some advice, I made a formal disclosure to the uni where I was studying . I was afraid they would say that I wouldn't be allowed to continue on the course because of the social aspects of the trade.

My tutors' response restored so much faith in humanity. 

They believed me.

They reassured me that they would help.

They did help by making accommodations and giving support.

Thanks to these, I was able to focus on the contents of the course and make the required progress to successfully pass the course.

After my course, I applied for numerous positions, ticking the Autism/ aspergers box in the Equal Opportunities section. I never got any invitation, in spite of my qualities and qualifications. Then I stopped ticking the box. Then I got an overwhelming response from frantic employers flooding my inbox to employ me. I took one of those jobs. Survived a month, and another. Then I quit. Through my resignation, I felt I had let some people down...and made some people's day. But best of all, I had preserved my sanity by repositioning myself.

Should I have told them I had aspergers? How would they have reacted to me? Would they have supported me like my tutor did? Would they have rejected me like the reverend? For people on the spectrum with Mind blindness, the professional life  and  social life can be a real minefield and one of life's uncertainties is to disclose ...or not to disclose.

Phagophobia- the fear of swallowing

I had just visited my week old baby at the hospital. She had been brought home 5 days earlier but developed  a high temperature, hence her return to the hospital. I hadn't eaten all day as I stayed with my wife and the baby...I finally got home, having been 'thrown out' by hospital  night shift staff at the end of visiting hours.

I got into my flat, famished and feeble, frantically prepared a heavy meal to make up for the breakfast and lunch I never had, ate and went to bed. Then it happened. That dream.

I had a dream that I was walking down a dark tunnel towards a blinding light when suddenly, I heard my wife and newborn daughter calling me, beckoning me to come back. I suddenly awoke to find out that I was choking on regurgitated food, the chilli burning the top of my throat. I could hardly breathe. I tried to inhale but all I did was to wheeze and cough until my airway was clear, and after the initial terror, I gave no thought to it.

A few days later, as we were having a family meal, I realised that I was struggling to swallow my food. I will try to swallow, then hesitate. 

Eating was terrifying experience for me. It was like trying to jump off a cliff. You'd bend your knees, see the depth, run out of courage and then fail to jump. It was as though my brain had told my body to swallow and my body said "no", a split second after the swallowing process had begun.

Sometimes, I actually choked because part of the swallowing mechanism failed to do its job. I would push the food down my tongue into my throat, expecting my wind pipe to close automatically, bridged by the oesophagus, which would in turn receive the food. Wrong. The food would touch the wind pipe and a flood of adrenalin would engulf me; my heartbeat thumping like an upbeat bass drum in my chest as I would be electrified by a panic attack, which I felt as a cold or heat wave (not sure which) in my scalp and tongue.

Unfortunately, this was not the first time in my life I had experienced this fear of swallowing. When between the ages of 9 and 10, I suffered this same episode. I was so terrified that I stopped eating and lost a lot of weight. I honestly believed I would die choking on some food. A devout Catholic at the time, I would often be seen making a sign of the cross before attempting to swallow any thing, convinced that I was living my last moments on earth. I would also cover my ears in case someone spoke or said something funny to make me laugh midway through my swallowing.

The family doctor could not understand my predicament and, thinking that I had simply lost my appetite, prescribed a sweet- tasting hunger inducing multivitamin syrup which was to be sprayed three times a day down my throat. My sweet tooth accounted for my religious adherence to the medicinal course. However, only time healed me from this strange symptom.

Now, I was 32 and the condition had suddenly come back. I needed a lot of water... One litre per meal. Without the water I would forego my food and chose hunger over risk. I once went to an 'all you can eat' Chinese buffet, having forgotten that I had swallowing problems. I put the first spoonful in my mouth and chewed, chewed and chewed some more. I couldn't swallow it. It was stuck in my mouth. All eyes were on me. I was hungry but I couldn't eat. I hadn't bought water. I would have spent a lot on water if I had to eat. I wish I had bought a take away pack instead.  Whenever I tried to swallow, my hands would fly to my ears to shut them... An action carried over from my childhood, out of context but had become an automatic reflex after 22 years of dormancy. After several trips to the bathroom to drink from the tap( which I wouldn't normally have done, ) I ended up eating half of the meal on my plate, then walking away.

It got a lot worse until I lost some more weight. My attempts to swallow was an ugly sight to watch, and an ugly sound to hear. My cheeks would puff in and out as the food made its way unsuccessfully to and fro the front and back of my mouth whilst I made exaggerated hand movements. You could hear the squelching sound of food mixed with water being churned in my buccal cavity. Initially, I could swallow my food by drinking any liquid. Then it got worse. I could only drink water and nothing else...

Later I realised that the less I focussed on swallowing, the better I could eat. But anytime I was reminded of my swallowing issue, it all came back again.

Statements like 'you don't like my cooking' or ' has your swallowing issue reappeared?' would trigger a comeback of the problem. Also, whenever I was placed in a social situation, like eating at a table in public, where I was supposed to be making conversation or answering questions, I would find it impossible to swallow the food I had inside my mouth. I would sometimes have to get rid of the masticated food.

Fortunately,  I did something I couldn't do when it happened to me as a child in the 80s: I went online and researched forum after forum until I finally had a name for the condition and found hundreds of people who exhibited the symptoms I had. It was called ' phagophobia- the fear of swallowing or (in rare cases the fear of being swallowed.)

I went to see my GP who thought there was a swelling in my throat. But I explained to him that there was no obstruction and no pain. Just intense paralysing fear. I explained to him that it was a bit like stammering/ stuttering. The sufferer would make several half- baked unsuccessful attempts to say a word then finally, after the umpteenth attempt, they would finally manage to say the word. The success of this exercise wouldn't have a pattern, it is a bit like playing Russian Roulette with your voice. You don't know when you will get it right or how many times you would try , and fail. This was exactly what I was facing. However, it was not with speech in my case. It was with swallowing my food. The only impediments to the food going down were my mind and my panic attacks.

" You need Cognitive Behavioural Therapy, "said the Doctor. "That is not available on the NHS." That ended my search for a medical intervention and I relied on self-help strategies to overcome the problem. It is not an anatomical problem. There is no pain involved however, the fear is intense. It is an extreme anxiety problem, a phobia. I still have it but it very rarely occurs these days. I think it's gone...I can't remember the last time I experienced it. This phenomenon usually follows a choking incident, either witnessed or experienced by the sufferer.

Here are a few tips that have helped me:

- Move away from any source of anxiety during meal times ( I moved away from interrogations, plans, discussions, bills and bank balances, disturbing news on TV ). These have been found to tighten my throat.

- Provide plenty of water( even if it won't be drunk) this provides reassurance for the sufferer.

-Give them some privacy-( Being watched put me under enormous pressure and I would stress eat..stuffing my self with food, only to realise that the pressure is preventing me from swallowing. Then comes the trip to the toilet, where I would have to discard the food.) I found that eating in a room all by myself relaxed me a whole lot more.

-Monitor them: having someone to act as a backup is an immense relief. Be ready to intervene when you feel they are choking or turning blue. Learn and practice the Heimlich  manoeuvre...just in case.

- Don't force them to eat all their food. A little bit of food eaten is a huge milestone. Pushing it further would trigger further anxiety- vicious circle.

-Provide an indirect distraction to enable them take the focus away from the swallowing process.(TV) but do not engage them in a conversation.

-Allow then to stim, speak to themselves, cover their eyes, mouth or ears as they give it their all to swallow their food.

-Celebrate their victories- never underestimate the huge effort they put into swallowing that spoonful we all take for granted. Reward them with ice cream,milk shake, custard, jelly or a drink. 

-Avoid denial but be reassuring.- they have the irrational conviction that they will choke to death if they try to swallow their food and the swallowing mechanism doesn't complete itself. Don't let them feel that you don't understand them. They will feel even more vulnerable.  Don't tell them that it won't happen because it would have probably happened before and they would lose trust in you. Instead, adopt a "together we will conquer that fear" approach.

Getting diagnosed (part 2)

This is the concluding part of last Saturday's post describing my desperate campaign for an official diagnosis.

 Eight months had passed by, and a myriad  of major changes had occurred in my life:

I had a new baby, making me a father for the second time in four years, I'd finally passed my practical driving test and I quit my job of five years to further my studies, a move I'd always been scared to make.

Suddenly, things started to plummet for me spiralling to a windfall of chaos which was beyond my control. I had pressures and problems in every single area of my life, leaving me clinically depressed. I was behind on my readings and assignments. I experienced minor disappointments in other sectors of my life which had major effects on me. I used to think a lot about ending it all. That is when I made a third attempt to seek help. At the same surgery. With a DIFFERENT GP this time.

Dr D was much younger than the previous doctor, though slightly balding. I spoke to him about my desire to get diagnosed, giving him valid reasons why my life depended on it. He listened with intense compassion, punctuating my sentences with an occasional "Awwww". That's how I knew he cared.

 He knew from the records that I'd been through the process before and was not successful at getting a diagnosis. I told him I did not have the means to seek a diagnosis privately and that a lot depended on my acquisition of this document. Furthermore, I confessed to him my fleeting thoughts that had doubled in frequency over the past few weeks. I found it hard to relate to my colleagues in my work placement. I wasn't confrontational or anything. I really liked them. They were a nice batch of people. I did whatever I could to support them. But there's this feeling of not belonging to most groups that follows me all the time. Also I was very quiet and mostly withdrawn, intently confused by all their social interactions in the staff room. My failure to engage them in a conversation and small talk like every other human being resulted in some expression on their faces that seems consistent with grudge and resentment. I felt under a lot of pressure. Fleeting thoughts. Again. 

To make matters worse, I had an issue with a very vocal member of staff who thought it helpful to publicly criticise my work in an attempt to achieve goodness knows what. (Earthlings call that"constructive criticism" in spite of the destruction it creates. I felt I should add it to a Manual of Absurd Terms alongside the likes of "friendly fire".) 

This last problem with my colleague compelled me to seek help before it was too late. On the surface, I appeared unfazed, smiling, and passive but no one could have foreseen the inner storms that ravaged my whole being.

 I requested that I be put on the drug I turned down months earlier. That is how I got on  a 10- month Citalopram (Celexa) course and a weekly Cognitive Behavioral Therapy session. I trusted Dr D so much that, for months, I missed what a neurotypical person would have discerned within the first few minutes of meeting him: he had no interest in securing  a diagnosis for me.

 I once walked into his office only to learn of the refusal that I be granted an assessment leading to a diagnosis because "I wasn't suicidal". Once again, I was baffled beyond words. He knew of my thoughts. That was why I was put on Citalopram in the first place. Why couldn't he tell them? I opened my mouth to voice out my protest but I felt a tightness in my throat resulting in a type of"glottal stop" that prevented the emergence of word and sound. Simultaneously, I seemed to undergo a cross between a  memory lapse and a disconnection between brain and body. I had no mental script ready for this unforeseen twist. My over-analytical mind worked out that very strong emotions and speech could not function concurrently within my central processing system. Finally, I was allowed 2 words by my brain: " O.K., thanks." And I was out sooner that I expected.

 I kept taking the drug, which was the best thing I'd ever done that actually addressed my fears and low episodes. I saw the GP weekly, then fortnightly, then monthly, before I decided I'd had enough of this useless trip. I haven't seen him since the summer. I also attended a completely useless CBT session for a while until I went on holiday with my family in the summer and missed one session in the process. I was quickly discharged. Thank goodness. It was a complete waste of time during which they tried to make me like football so that I could join in conversations. Finally, after a few disagreement with relations regarding their perception of antidepressants, I went off the drug. I tapered off by taking half the dose for 3 weeks, then the same dose every other day and one beautiful morning, I made the decision to go cold turkey, anticipating major withdrawal symptoms. Nothing of the sort happened with the exception of slight dizziness whenever I looked sideways, and the return of the low moods I was born with. 

This concludes my post on getting diagnosed. It is an unfinished post because I'm still in the active process of seeking an avenue to getting diagnosed...

How a change of routine affects my mood

I promised to bring you the part 2 of my diagnosis saga. I will do so tomorrow. Instead, I will write about my day and analyse the impact of the events on my aspie mind.

I woke up this morning in anticipation of a normal day with my normal routine. Shower, dress up, grab briefcase, catch the 7:14 train from my local station to Honour oak Park station, weetabix breakfast biscuit on the bus no. P14.

I usually get to work earlier than my scheduled start time to relax in the staff room all alone, away from the hustle and bustle of the morning commute and the anticipation of social interaction during the course of the day. 

I'm now out of my house and have been walking for 8 minutes towards my local overground station when I tapped my pocket (I ve been doing that nearly all my life, every 10 minutes to reassure myself that I ve got my Oyster Card, which has my monthly transport ticket on it, my keys, which are always tied to my trouser belt hole with a rope, and my mobile phone...)

This time, with 3 more minutes to get to the train station, I realised that my Oyster card wasn't in my pocket. It's the same pair of jeans that I wore to church yesternight so where could it be? I turned all my pockets inside out three times in a row before concluding that I must have dropped my Oyster card at home somewhere. With a dull anger against myself, I made a u-turn for my flat, abandoning all hopes for that much awaited "me time" in the staff room. Without much thought on how I would pull through the day without the me time, I opened my front door and searched every nook and cranny of my flat. Without much success, I rushed to the station where I exited yesternight. Could I have dropped it on the way? I was hoping that an honest responsible person would have found it and returned it to the station because it had my £205 monthly ticket on it.

I played a little movie in my head in which this bloke, with his trouser waistline hanging down his crotch and wearing huge headphones leaking tinny music, sees my oyster  wallet on the floor and exclaims, "peeeak, man?", as he pockets it and walks away.

I retraced my steps from last night, asked a national rail worker if any found oyster had been handed in. He directed me to the main National Rail station which was  quite a distance from where I was. It was an incredibly crowded station on a Monday morning rush hour. I always bought my ticket on weekends or the night before, just to avoid this insane queue. Now, there I was in this slow-moving queue. Every person being served at the ticket booth had some sort of tall story to tell the ticket vendors and anytime they smiled or laughed, I felt the steam of irritation rise steadily inside me. I prayed that I would have enough spoons left over to explain my situation to the ticket office person. Finally, why it got to my turn, I hurriedly recited the script I had prepared  and the guy serving me went to the back room to check if my oyster had found its way there. It had not. He then gave me a number to call so I could cancel my card, and advised me to go to a London Underground station to purchase a new Oyster card. 

"How am I going to get to the Underground station without my card in the first place??" I asked perplexed.

"You're gonna have to pay, I'm afraid." Was his reply. But then he reassured me to keep the receipts so I can claim refunds against any expenses incurred prior to the issuance of my new oyster.

I called the number I was given, listened to some "unuplifting"music for what seemed like an eternity then a woman with a strong accent which made me wonder whether the customer service was outsourced, picked the call and after bombarding me with security questions to check my identity against that of the lost card in question, she successfully cancelled it and asked for my new oyster number. When I told her I didn't have one yet, she gave me a reference number and ask me to call again as soon as I've purchased a new card.

So I went to the ticket machine and used my debit card to pay for a single ticket costing £5.80. It would have hurt loads if I didn't know I could get a refund. I patiently waited for the machine to dispense my ticket AND my receipts which I meticulously folded and placed securely in my wallet. Then I went to the platform to wait for the next train to London Bridge. It was delayed. By then it was nearly 8:00. I had lost all hope of getting to work on time so I called the work place to explain the situation I'd found myself in.

After forever, the train slowly trudged unto the platform. Fortunately, I got on it. Unfortunately, I couldn't get a seat, not even room to move my hands. We were jam packed like sardines and I has paid a fiver to stand on a slow moving train. 

Finally, I got to London Bridge at 9 am,  joined yet another queue, was made to fill an oyster form, paid another fiver for the  empty oyster and another five pounds worth of pay as you go top up. Then I realised that the £5 I put on the card would not suffice  for my travel to work and back due to all the different changes of trains and buses I would have to make. Consequently, I added another £5 top up.

 Once I was done, I found a quiet place sat on a staircase, drained of all my energy and phoned the customer service to give them the oyster number. I chanced on the same woman and she remembered me. She told me that the Season ticket I had on the old Oyster card would be transferred to my new card tomorrow morning. Then I mentioned to her that I had the receipts from all the costs I had incurred from this mishap. I asked her for an address to send the receipts, this was her response: 

"Who told you that you could get a refund? The person who advised you on that advised you wrongly! When you lose your Oyster card, you are liable for any running costs for the next five days or until your replacement arrives."

I was in profound shock. I was deeply disappointed. Things couldn't get Amy worse at this point. All I could say was 'wow ... Ok...thank you! " Then I hung up.

I remained seated for a while... I had lost appetite, and the will to live. This might seem trivial to a  neurotypical mind but as I sat on the stairs, the rails of  my mind were congested with trains of fleeting thoughts that brought my entire life to a standstill. I didn't want to go to work anymore. I just wanted to go back home, curl under my duvet and sleep the day away. I felt weak, angry and sad. I'd lost my Oyster card, wasted a non-refundable £20.80 transport in fare that should normally have cost only £8.40 for an unlimited day travel card. I had also wasted 2 hours of work which might or might not be deducted from my salary...I don't want to think about it.

As I made my way towards work, fuming, I prayed that no one would ask me about my oyster. Well, they did. I had to contain myself, swallow all the brimstone and fire inside me and put on a totally different interface to what's within. That's how I've always lived my life. I can be compared to a computer webpage, with a colourful interface that acts as a façade, hiding from the public view, the unsightly confusion of HTML and computer programming language.

I wasn't myself at work all day due to the major shift in my routine. I kept thinking "what if they fail to  transfer my season ticket onto my new Oyster card tomorrow and I only find out at the ticket gates prior to my train's departure? That would give me something to keep me awake tonight !     

After a long day of work, as I run to catch my bus I had just what I needed as the icing on my  day's cake:   A famous motivational speaker, entrepreneur and author, that I admired so much, died with his wife in a plane crash on his way to a conference. 

After my initial sinking of the heart, I googled him on my phone to read all about him, I visited his facebook page and saw a picture of him with his his ill-fated private jet in the background. In a typical aspie style, I googled the jet number and lots of information on the vessel was available online from many sources. There was a website dedicated to pictures and sightings of individual planes. Within minutes I was hyper focussing on flight number ZS-TJS...

Getting Diagnosed.

My second post followed my steps as I unravelled the mystery of my life: why I seemed so different from everybody I knew. I'd finally hit the nail on the head: I have Asperger’s! Great! Now what next? I'd done all the online tests (Autism Quotient, Empathy Quotient and Intelligence Quotient). So, all I had to do was to walk into my GP's surgery with all this info and walk out with a comprehensive diagnosis, right?

Wrong!

 I read from forums that people had to put the fight of their lives to get a diagnosis if they were past the school- going age. I braced myself for a fight as I booked a slot to see the GP one afternoon in April 2013. I walked into the GP's surgery on that day clutching a stack of papers. One was a detailed list of all my symptoms categorized under three main headings: 

-Difficulties with social interaction

-Difficulties with social communication

-Difficulties with social imagination

The other paper was a summary of how I had suffered in life as a result of my social disability and high anxiety levels that had often made me lose the will to live. Literally. I took that document along with me because experience had taught me never to rule out the possibility of selective mutism rearing his ugly head when I least needed his input. My "cheat sheet", as I called it at the time, would also serve as an aide-mémoire in case I blanked out. Lastly, I took printouts of every online autism test I had taken. I even had a letter ready in the event of my case being dismissed for lack of evidence. This was composed from an online template. 

 When my name was called in the waiting room, I stood up, smiling uncontrollably. I always did whenever my name was called after a long wait. I had arrived at the surgery over half an hour before my appointed time thanks to my fear of lateness.

I hadn't told anyone I would be doing this apart from my sister and my two best friends, Chris and Gilbert who were my pillar of support through this chapter of my life.

The doctor I was due to see was Dr B. As he ushered me into his office, I had a good look at him. He was an elderly grey haired man with a surprisingly young-looking face. It appeared to me as though part of him had been immune to age and time, that his face was that of a young man, transplanted unto the body of a retiree. I felt at peace with him. I simply had to trust him. I was in safe hands.

“Hello, how are you?" He began.

"Fine thanks! “I quickly replied...while he waited, probably expecting me to say more than that.

"What can I do for you?" he continued

"I believe I have a form of autism called Asperger's syndrome." I whispered. I gave him a summary of my life and handed him my stack of papers. After skimming through my pack, he announced that he would be putting me forward for an assessment but because I was already half way through my early thirties, there was a limit to what medical science could do for me to turn things around. I was given a further appointment for a follow up on the progress of my referral.

I smiled because I didn't know what to say to that and I was satisfied I'd gotten my referral without the much expected fight. Wow! That was quick, I thought! Everybody else struggles for this and I didn't even have to fight for it. Someone must be praying for me!!

A month later, I was back in Dr B's chair, listening to the horrific results of the referral.

" ...so they wrote back to me saying that autism is a 'childhood disease'. It would therefore not be the best course of action to proceed with your referral. Instead, a prescription for the treatment of your Generalized Anxiety Disorder was suggested." He spoke some more but I couldn't hear a thing. All I could hear was the sound of my heart sinking at 70 mph!

I smiled and thanked him. Took the prescription and walked away, too flabbergasted for words.

In the following days, I drafted a strongly-worded letter to the GP Surgery, copied in Dr B and his superior. I posted it and forwarded copies to many organisations including the National Autistic Society and the medical regulatory body in my area. I didn’t forget to send one to Patient Complaints.

Within days, I received a reply from the surgery apologizing for my treatment and offering me another appointment.

That appointment was only used to inform me that the surgery only followed simple procedures and that the final decision relied on the assessment team. Following this, the GP finished off by saying that the assessment team will contact me with an appointment...which they did!

That was the very first time I entered a psychiatric hospital. As I sat in the waiting room, surrounded by people who spoke to themselves and exhibited interesting patterns of behaviours, I appeared to be the odd one out, quietly playing a game on my iPad.

The session lasted for half an hour with the psychiatrist asking me: "Do you hear voices? Does the TV ask you to do things?" I almost burst into laughter...I wondered how he could keep a straight face and ask me such questions. I elaborated on my family history, behaviour patterns, social history and the tiredness I feel after the slightest interaction...and my worries."

"What are you most scared about, today?" He probed.

I confessed that I worried that he (and everybody else) would think I'm making it all up, that I wasn't on the spectrum and that I would find myself back at the point where I was confuzzled by why I was so different and I couldn't socialize like everybody else. " 

"I don't think you're making it up at all", he said, gravely. "I believe you have Asperger's Syndrome." At that point, I would have cried if he hadn't burst my emotional bubble with a …"however, an official diagnosis would be costly for the NHS and you are way too high functioning to be a cause for concern. I suggest you sign up for Cognitive Behavioural Therapy to address your anxiety and social phobia. If you still wish to have a diagnosis, which I wouldn't recommend, you could look at the private sector. You could obtain one for at least £2000."

I stood up, thanked him, picked up my coat and left the place as empty- handed as I arrived and a lot more empty-hearted than when I walked in.

 Before I exited his office, I requested a writ of his findings to be mailed to my address. That would be the closest thing to a diagnosis I would have for a long time to come...

[To be continued...]

Two’s a crowd; three’s a riot: My reflections on social interactions

As a teenager, I got my first ever social breakthrough when I joined three other boys in my school to form a contemporary Christian acappella boyband. It was an incredibly huge step for me as I transitioned from spending time alone studying or sleeping to moving as part of a group, singing, rehearsing and conversing. The group was made up of Nelson, the very first friend I made in that school, Johnny, the group leader/manager/ trainer, and Godwin, who was one year behind us although he was older then us by a couple of years. I absolutely adored Nelson and I was getting to know Johnny, who was quite loud but friendly. He was the type that would call you names and appear to slag you off, but in a joking way. At first, I couldn’t pick up the signal that he was joking (broken antenna) that is why it took me so long to warm up to him.

  Godwin was the one I least bonded with, partly because I rarely extended my friendships outside my year group and partly because I found him somewhat confrontational, aggressive and intimidating. I was aware that I was the only one to think of him that way because he was popular with everybody else so it must have been me. Anytime we had an argument, he would bombard me with unexpected questions to which I wouldn’t have a ready script and I would look so stupid. Needless to say, I kept interactions with him to a minimum.

People liked our group and there had never been any such concept in the school before. It was at a time where boybands like Boyz2Men were hitting the charts. We sounded a bit like them (true!) and we would sing at assemblies, church services and other whole school events. After singing, the fans would mob the group to chat with them… minus me of course. It would seem they were allergic to me, even though I was the lead singer and had been tipped by some as the best sounding singer. I also felt like the odd one out, the weakest link in the group because the other three had been close friends for years, nurturing and ‘setting’ their friendship on a daily basis. I, on the other hand, felt like an outsider. They often spoke about things that happened before my entrance into the group and I often did not understand what they were talking about.

I also realised that I could chat with each member of the group individually (Except with Godwin, from whom I kept a safe but cordial distance). However, whenever the group was complete, I kept mum and became a listener. To his day, I am unable to keep a conversation with more than one person at a time. As soon as another person joins in, my listening mode kicks in, regardless of my familiarity with both interlocutors. Perhaps, could it be an off-shoot of my selective mutism? I recently found out during my reading of Tony Atwood’s book that the autistic person’s brain is sensitive to all the  connections it makes with the people they are engaged with in conversation.  During my reflections I realised that:

·         In a conversation with 1 other person, only 1 connection is made( from myself to person A)

·          In a conversation with 2 other people, 3 connections are made( from myself to person A, self to person B, person A to person B)

·         In a 4 way conversation, 6 connections are made

·         5 way conversation- 10 connections

In other words, the more people present, the harder the autistic brain works. This sequence of numbers (1,3,6,10,15…) are known as Triangular numbers. To find the number of connections my brain makes for a given number of participants, I use the formula:

Xn=n(n+1)/2-n where  n=number of people in the conversation and Xn=number of connections my brain has to make.

For example, I came home  from work one day to find a full house. We had surprise guests: my in-laws and their cousins had come to see our new baby: in total, 6 people plus myself, that makes 7 people.

The number of  connections to be made with 7 people would be X7.

So: X7=7(7+1)/2-7

       X7= (7x8)/2-7

     X7= 56/2-7

X7= 28-7

X7=21

My brain made 21 connections on that day…I went into shutdown mode the minute I entered the room…

 So whenever we had a rehearsal in the group, my brain would labour through 6 connections.

Back to my story…When we completed secondary school, we devised a plan to meet in order to keep the group and the friendship alive because in 1997 Africa, mobile phones were not as common as they are today. Email and the internet were unheard of. I was the only one without a landline at home, though I still remember Nelson’s then landline number (50-66-99). We would normally meet at our old school, in Nelson’s house or Johnny’s house. After every practice meeting or performance we would plan the date and venue for our next meeting, which usually went well… until I once mustered the courage to suggest my house as a practice venue.

On the eve of the practice, I could hardly sleep. I was so excited to accommodate my friends… the people in my area would see that I had friends too and that would mean a lot to me and my self -image. I was seen as the loner in the area. Also, my family would hear me sing with my team for the very first time. I just couldn’t wait…but deep inside there was this “what if” lurking in the back of my mind…what if they failed to turn up?

On the D day, I put on my best clothes. I had cleaned up my room, where the rehearsal was due to take place. I’d arranged my collection of cassettes in the order in which I acquired each of them. All my cassettes were from a specific record label that had a dove as their logo. All the doves were lined up in three rows and in several columns. I just sat there, 3 hours before time, in the hope that Nelson would turn up earlier than the others so we could catch up On our friendship. Whenever I went to an unfamiliar place, I would set off earlier than scheduled because of Topopragnosia (place blindness) and the prospect of losing my way. I expected my band to do the same. I waited. And waited. And waited. The meeting was at midday. It was now 10 pm. No sign of the boys yet…I sat alone on a chair in the middle of the room, waiting for who would turn up first. I was terrified it would be Godwin. We had so little in common it would seem painfully awkward for the two of us to be sitting all alone in a room, staring into each other's face for any amount of time. I noticed one of my cassettes had an inlay card that was slightly askew, creating an uncomfortably discord and disturbance in my carefully regimented filing system. I adjusted it. I wanted everything to be perfect.

Finally, after 2 more hours of sitting on a straight wooden chair, the clock struck midday. My sister had made some aromatic Jolloff ricefor my guests. I was hungry and wanted to eat. But I was so tensed up and was unwilling to eat without my friends. As I waited hungrily, there came a knock at our iron gate that set the dogs in barking frenzy. To me it was a refreshing sound, comparable to the first lap of water by a thirsty race horse. I looked through my window as our caretaker opened the gate. Who would it be? Nelson, Johnny or Godwin…maybe all the three of them?

Neither. It was my sister’s annoying then boyfriend. He had a big round head, and big round glasses that would later remind me of the cartoon version of the Halifax man. After 30 minutes, there was another knock at the gate. By then, my anxiety levels had shot through the roof because it was nearly 1 pm.   Looked through the window. Who was it? Yep! You guessed it right! My sister’s annoying boyfriend again. He had popped out to the shops, unknown to me. The expression and half smile on his face made it seem as though some mad scientist had used a tin opener to cut round his cranium, taken his brain out and done an amazing job of sealing the skull back together again with invisible glue to the highest standard of cosmetic surgery wizardry.

 2 o’clock, 3 o’clock, 4 o’clock …I was in full panic mode. I had lost appetite and was no longer hungry. I sat and wrung my fingers, bit my lips and popped my joints (stimming) . I had butterflies in my stomach. Were they lost? Had something happened to them. By 6 o clock, I was sat in the same position when my sister and her boyfriend came in to tease me. I was advised to relax because they wouldn’t come.

They never did turn up. It was a wasted day. Spent entirely sat on a wooden chair, with the exception of the odd loo break. The torrents of emotions that flooded my heart that night was indescribable by human vocabulary.

 Several weeks later, we managed to meet because Nelson came to my house with a date and time for our next meeting that was arranged in my absence. Thereafter, each one of the members presented an extremely valid excuse of an impediment that prevented them from ever beginning their journey to my house on that day.

It took me several years to comprehend that the failure of all  the group members to honour the Outsider’s invitation on that day wasn’t down to pure coincidence. It was never their intention to come to my house on that day in the first place. I just wish they knew what they’d put me through. Did I fail to notice the collective rolling of eyes or some sort of subtle signal when I asked them to come to my house? I will never know.

 I remained an active member of the group, cherishing every minute I spent in their company. But lessons were learned and I grew wiser: Never again did I open my doors for a rehearsal.

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...