A glimpse of the world from the eyes of an autistic doctor
Dr Tahleel Javed ( CEO STAND)
For most of my life, I have felt like an outsider even amongst the nearest ones. I have waited for “my people” to come and take me back to my planet for as long as I can remember because this planet always felt alien.
What if one day you get up and realize the life you were living was not real but just a reflection of reality? The phrase sounds straight out of a philosophy book or an episode of black mirror, but believe it or not, it is true for so many, who you might have come across in your everyday life as friends, colleagues, managers, employees or strangers.
In this piece of writing, I will try to explain how, as I take you on a journey with me. A journey that started 2.5 decades ago.
Working in healthcare, and especially in psychiatry, I have noticed quite a few things. One of them being the fact that people reach out for help only if something is causing a significant disruption in their day to day lives. Take parents for example or schools. Flags are raised when a child is being “too naughty” or “too quiet” or “too distracted”. All the less wanted adjectives. But everything “positive” is taken as a measure of pride automatically without digging into how, why and possible implications.
Have you ever heard a parent be concerned about a child being “too smart” or “too sensible” or “too complacent”, “too patient” or “too caring”? Probably not. But don’t you think if deviation from the standard is a cause of concern, these factors too should be brought into the discussion? If not with the professionals, at least with the child? Before reinforcement of what we perceive as “good behaviour”?
I say this because I was one of those children who grew up to be a “successful” adult with a degree, great job and academic accolades. Naturally, I superficially took pride in all of that too Before I began shutting down both physically and mentally.
After a series of unfortunate events, Fortuna decided to strike me with a stroke of luck in terms of healthcare professionals I came across and I ended up being diagnosed with ADHD, and later autism.
This might appear to you as a rare occurrence, (I used to think it was) but it wasn’t. In fact, I am beginning to doubt if most of the “rare conditions” we studied in med school are actually rare or rarely diagnosed if presentations drift away from the standard textbooks?
My view of ADHD and autism was that of most if not all junior doctors, based on what we study, and see both in practice and in media. ‘young boys, hyperactive, throwing tantrums, difficult to calm down, slow in achieving developmental milestones, delay in speech, no empathy, lack of expression, no eye contact, strict visible routines, next to no social functioning independently’ and so on.
So I was understandably but (now shamefully) quite upset with the idea initially that I could be autistic. I had accepted ADHD before with much less reluctance and more enthusiasm as I felt it explained a lot of things I couldn’t make sense of before, I even spoke about it on an Instagram post to ‘create awareness’.
If you were not in my head you would have seen it almost as if I was relieved. And a part of me was. But the part I did not show to anyone besides my mom was a deep sense of betrayal I felt by the medical education I had received. I had never learnt or seen things before in textbooks, notes or on media what I was learning now from my coaches, ND fellows and support groups.
But even though I just said “oh” when it was highlighted that I could be autistic and asked to seek further assessment if I wished. I was considerably upset. Not just because of the revelations but also blatant dismissal from anyone I shared it with, except my family who knew me as a kid and were part of the process too or other autistic fellows. Not surprisingly the strongest comments were made by doctors who told me things like “there is no way you could be autistic” or “everyone has quirks” they said. This meant that even receiving a diagnosis, I was caught up in a vicious cycle that prevented me from accepting or acknowledging who I am as well as seeking any formal support.
Can I blame them though? I don’t think so. Based on my knowledge prior to the diagnosis, I wasn’t autistic according to my own knowledge database too. As a toddler I achieved all my developmental milestones, in fact, I was quicker to achieve them. There was no speech delay. I wasn’t fussy at all. I did well at school, I didn’t have rituals or repetitive behaviours (at least not obvious ones). But yet had someone asked in detail, like they do in assessments, they would have then learnt a few interesting details.
I didn’t crawl but started walking. When I started speaking it went from single syllables to three-word sentences. I copied behaviours of adults (which my family perceived as being too sensible for my age and proudly quoted examples). I copied accents, sounds, phrases and movements too, both of humans and sometimes animals (not going to go into that in detail) but just for the sake of reference my “show” was the peacock dance (we had two peacocks).
You would also have learnt that I was “too patient” with pain “too calm” in situations children panic in and got injured a lot and that I was “too well mannered”, “too clumsy” and liked to hide in dark spaces when upset.
I always embraced the compliments too even though I did realize they weren’t “true”. Who doesn’t enjoy being praised? Yet, this gave rise to a lot of residual guilt that is still hard to get rid of. I had my own restrictive and repetitive behaviours that I did not realize until someone asked the right questions.
I could feel pain, anxiety, anger, fear but not understand, quantify, process and express it properly. I did not know if it was “ok” to do it, and if yes, how. I was more expressive about an itch than a wound because I had seen my younger brother do it when he had a long-lasting rash. In short, I constantly needed references. And since “anger” anyone showed during a conflict was “bad” I expressed it by hiding under the bed, in the trunks, cupboards or climbing my favourite tree and sitting on the top, distracting myself by thinking about all escape routes in case there was an invasion and I needed to take everyone in a safe place.
The person I used to be angry at, usually my younger brother, or elder cousin was included in the rescue plan too, but I would purposefully give them the “hottest hiding” space, in my head as a means of my revenge. Because I hated heat and light and considered it almost reciprocal to torture.
When my nana passed away and my dad went abroad almost within the same time frame that was the most turbulent time for me, had I ever narrated my story before I would have started from there. In my head that, and the events that followed was the reason how I was.
But the truth is the only person who I thought could “get me” was my nana and I spent most of my time with her. “Be ji” I called her. I trusted her and everything she said was taken down as mental notes I would always follow. And even though I have written this before and tried to voice it many times but have still not properly cried or grieved for her, or been able to find an expression for the void her absence left.
I have often been asked that if I could go back in time and give a message to myself or my caretakers what would it be? I have not answered that before but I will today. To myself, I’ll obviously just give the current data about autism and what we know so far and a tape-recorded version of Adele’s “Easy on me” for both myself to listen to and to use for communication purposes.
To my caretakers, just two words “believe me”. I have seen many parents laugh at stories children make up or agree with them in patronizing tones. I have seen parents expressing disapproval when they see their child is blatantly “lying”. But I have often wondered if they considered the possibility that if seemingly unbelievable stories, were not stories at all. Which they would have known if they considered the possibility for a moment and explored further?
I have always perceived being doubted as a direct attack on my integrity, which I have always excessively valued. My pride and integrity have been interwoven in a strange fashion.
When I used to be watching cartoons and used to “get lost in my world” without realizing someone has changed the channels and be questioned about watching content I was not allowed to. I had no explanation besides repeatedly declaring “I was not”. Similarly, I once told my cousin that I “could hear light”. It took courage because I knew it sounded stupid. Even though she did not call me a liar she laughed, even gave it a name: ‘Glitters’. I could not answer or explain it properly. But in both scenarios listed, and a few others, I was deeply offended, and my pride did not allow me to share any more with either for precisely 22 years to follow.
I would never have understood, about the light without doubting my sanity had many other autistic people not related similar experiences which are known as ‘synaesthesia’ in scientific terms which is defined as “a perceptual phenomenon in which stimulation of one sensory or cognitive pathway leads to involuntary experiences in a second sensory or cognitive pathway” according to Cambridge.
Surprisingly it is not a novel term, and a lot of research has been done with the first recorded case attributed to Oxford university in 1690. I have experienced it on numerous occasions, more markedly in stressful situations. Just like stuttering or being excessively clumsy when anxious. But let alone parents of young children, How many of us (if any) would have even considered this or tried to rule it out as a possibility had a patient in an acute setting narrated a similar experience?
Now if have given the impression I had strict parents or lack of love. Both are wrong. The restrictions both with regards to my behaviour and my ideas of what is allowed were not imposed by my family, but my own understanding and interpretation of things, ideas and expressions which ( I discovered only recently) had been quite unusual if not wrong. Yes, my mom has been strict in many ways but only to raise me as a good person.
She even gave up on the job she dearly loved to raise me and my brother, and I know she loved it by remembering how happily she used to get ready. For her education came first, so she expressed her love by spending her time thinking about ideas on how to make learning interesting. We did not have Cocomelon back then so she made me cookies in shape of alphabets and numbers, and added colours in them .
Now at that age, I could pick up on the amount of time and effort she was putting in, but I did not see it as an expression of love, I saw it as her wish for me to learn and excel and well, eat.
So I diligently did both, even when I did not want to. There are many things my mom and I talked about, during and after the assessment where she told me about things I “loved” as a child. Which made me emotional, sad and angry simultaneously. Emotional because she remembered, sad because she had got it wrong. And angry because I never had the courage to tell her the truth, back then or even now.
The truth being, I never had a sweet tooth or liked cookies. In fact, they were hard sometimes, and too soft at others. I ate them to make her “happy”. In fact, even after learning, I would specially request her to make the cookies, to see her smile when I return the empty plate ( sometimes hiding them outside and LYING I had eaten them) and sometimes purely as a form of connection. Now it sounds like a sweet thing to do for a child right? In fact, some of you might have reacted with an “aww” if I was narrating the story in person. But it was not that simple.
Because all this time my mom was going an extra mile for me, I was doing her “a favour”, with a strange resentment building inside slowly. What I really wanted was for her to just be with me, by my side always like nana. And she would have gladly done that had I asked, but I never did because in my head it was “wrong”. Anything without a “point” or being “productive” was not justified in my head, so no matter how much I wanted it I could never openly ask.
I made things more difficult by not being able to communicate what “love” I wanted because I remember getting a kiss on my head often. That did not feel good. My head and hair have been a marked territory to date, that was reserved only for my nana. Now anyone who has spent a lot of time with me knows that including my best friends that even though I can be extremely clingy, love cuddles and hugs, but touch my head, and face my wrath.
My wrath being an annoyed “NO!” or doing something that makes you equally uncomfortable.
Similarly, the only time I have experienced jealousy was the effortlessness with which my younger brother could connect with my mom and do what I had been trying for a long time with such ease and entitlement. I am not talking about a unique talent, in fact, something I have seen many children do, he used to hold and feel mama’s hair before sleeping. Now my mom had never stopped me from doing that, in fact, she had plenty of hair and long enough for both of us to use.
I have spent nights experimenting, as both she and my brother slept thinking I am asleep too. While I was trying to make myself like the texture of hair and somehow procure that sense of connection through them. I could not. I even tried taking out the hair from my brother’s hand slowly without waking him up so that I could see if having all of the hair to myself would make a difference? It did not.
I kept my mom up for a long time though, asking her to tell me stories, the same three stories every night sometimes more than once a night. The cruellest bit was that It was very important for me, that she be looking at me directly and would turn her face with my hands every time she moved it an inch. Sometimes she would fall asleep and I would keep on waking her up until the story was complete. After that, I would watch her sleep, think about how could one possibly milk, liquid gold out of a goat that one of the characters in the stories did. And fall asleep on the other side.
I had a pretty ordinary school life, I had my share of problems, and my share of good memories but they were never problems I could identify because I never understood they were. When someone wanted to take my lunch I took it as a sign of endearment and happily gave it. I created some problems for others though and only a few months ago understood why I was not liked by my peers in school except my best friends and their families in primary school but adored by teachers.
Most of those problems rose from my urge to restore the balance in the world by “doing the right” thing and taking things literally. It was not until O-levels when a classmate clearly whispered to me what I was supposed to do/say to the teacher when she asked me about who rubbed the board when I realized the power of withholding the truth. It went so successfully that I still stick to it unless there is no other option, and it is harmful for someone.
I later became absolutely pro at mediating arguments and fitting in to literally any environment by virtue of my learning and noticing details. It helped my friends a lot later, in a variety of scenarios but as far as my own conflicts were concerned, I still acted with the same naivety of a seven-year-old who would need “an adult “who knew them to interfere and present their case to the other party. It was difficult to understand vague concepts like “space” because my definitions were different. So were the measures when it came to things like success and investments. But the most difficult part always has been letting go without understanding or until it “makes sense”.
Unfortunately for as long as I can remember I was that adult for almost everyone around me, so they had no doubts that I could possibly need help with that.
I consistently had a specific set of friends I can still count on my fingertips. Up until grade five, two boys, from grade 5 to O-levels one best friend, a group of friends in O-levels, none later except a teacher / mentor and two juniors and then a group of four that increased to six throughout college and foundation years. I am still in touch with most if not all of them. And turn to them when I need to ask something about myself, I am not very sure of.
My view of the world was very restricted in terms of what I knew about myself and how the world works. Almost as if living in a paradox I could not make sense of. I knew I was not a bad person based on my own definitions, yet I struggled to accept myself for who I am. I knew my worth, I knew what I brought to the table exactly, yet I wondered if it is enough because it never seemed to be enough to fit in.
I had clear goals, yet I judged them based on the standards set by society and disapproved of them on my own before anyone else could. I was clear about my likes and dislikes yet made efforts to adapt even when I did not have to because I felt that was the right thing to do. I lied to hide my feelings, Yet truthfully and consistently expressed emotions like love and appreciation I strongly felt. I was confident and eloquent and wrote novels in terms of explanatory paragraphs. Yet struggled with conveying what I mean or deciphering what and where to say and what to withhold.
Socially I attended weddings, parties and made plans for get-togethers. Yet I used to be asked why I am “sad” in the midst of those and had no reason. Despite being the “star child”, and saving those around me from potential situations that could cause problems, The amount of times I have been in trouble with the authority figures unnecessarily because of my “suspicious attitude” whilst I was on my own is simply hilarious. From being stopped at immigration to being stopped for “stealing” things I had paid for, despite having the receipts. I have seen it all. Gotten out of those too, because well every time they eventually did find out the truth even if I was too frozen to say it at the right moments. But every time in those moments I felt utterly helpless. Like in those dreams where you are screaming but the words don’t get out.
The only gatherings that included people other than my friends that I have genuinely enjoyed to date were concerts. I have loved music for as long as I can remember, and I felt that when my favourite songs played, I wasn’t thinking about anything else just focusing on both the melody and the lyrics. And the people who I’d be scared of, moments before and after, suddenly became “part of my gang” as they sang along.
Everything I have said above is true for many of the other autists I have met, who are “high-functioning” or to put it in a better way good at masking. Unfortunately many are not as lucky as I am and end up losing jobs, families, and sometimes lives based on views of how “autism looks like”. It is called Spectrum for a reason, that too a radial one, not a linear one with multiple presentations and spiky profiles. Many have associated physical health conditions, which have proven associations with ASC according to scientific data but are regularly dismissed when looked at as individual problems. They could be as serious as atypical heart conditions, undiagnosed immune conditions, dysautonomia, connective tissue disorders and “rare” genetic syndromes.
I hope by now you have gotten an idea of why autism isn’t and shouldn’t be seen as a ‘quirk’ and why we need more awareness. So I will just come to the end by telling you about what difference can a diagnosis make if autism is just a difference that can not and should not be changed?
The simple answer is that it changes nothing but still changes everything. I am still the same person I used to be, with the very same lifestyle and habits. But what changed is that after what felt like eternity, I finally have accepted myself and am happy with who I am. I am not actively trying to ‘fix’ myself because I now know there is nothing innately wrong or broken.
Little modifications like using headphones when I have to use public transport means that I don’t panic or forget where I have to get off or check my phone every 30 seconds to make sure. It means that I don’t have to give myself pep talks to try and face the cashiers at counters which have always caused me massive anxiety and have resulted in me panicking and leaving stuff behind. I simply use the self-service or order online. I have learnt to take care of myself too, by realizing It is not uncommon for autists to “forget” basic stuff and not understand or confuse emotions like hunger. So I take extra care to remember to eat. I have also started to learn how to use certain traits as a “blessing”. E.g. perseverance, hyperfocus and not taking things personally. Most importantly not understanding criticism covered in sarcasm coming from people I don’t know, has been nothing short of bliss.
This doesn’t imply that I have turned into a narcissist and accepted myself as perfect. I am far from that. I am open to learning and changing things about myself that need to be changed. I am open to new possibilities. I am not a hero or a villain. I am not the oppressor or the victim. I am just an average human who wants to be allowed to be her authentic self without being judged or advised to change if being myself is not causing any disruption. I might not even have asked for that favour, but for me now it is a matter of “equality” because I have seen people be openly and proudly rude to others, be mean, deceitful, snobbish and much more. I have tried hard not to judge them because I wasn’t in their shoes but I can now confidently ask that if people can be all that “openly” what is so wrong or embarrassing about being autistic?
In a nutshell, like everyone I have had my share of both good and not so great bits in life. But one thing I want everyone, especially the medical community, to understand is that just because we can not see or make sense of something does not imply it is not there.
Sadly many of us have or still practice it if we do not find out the signs, symptoms and diagnostic parameters in line with our differentials. It is quite possible that we are not looking for the right signs/symptoms or not asking the right questions. Simon Sinek said, “the eye doesn’t see what the mind doesn’t know”.
The purpose of sharing this personal journey is the hope that you may start seeing, people, friends, colleagues, clients and patients differently. Medicine is full of exceptions, especially when it comes to the human brain. Even after years of research, there is very little, we know about so many aspects which make both neurology and psychiatry one of the most interesting and curiosity sparking fields. But unless we are open to learning new things and accepting things that could be different from how we view them to be, we would not be interested to find out more, which will only halt the process of discovery and learning.