• autifacts

Have you never realised you were autistic before?

"How come you've never realised before that you are autistic?"

It's a question I'm faced with more and more, especially now that I am capable of educating people about my (dis)abilities. And really, there's no easy answer here, or better yet, the answer is multi facetted.

For one, awareness about autism in girls has only recently increased. Over a decade ago, I also suspected I might be autistic, but when I finally got my doctor's permission to get tested, the therapist had absolutely no clue what to do with me and I was sent home. Strangely enough, I accepted that result wholeheartedly and every shred of suspicion about my own autism vanished in silence. It wasn't until my son was diagnosed that the suspicions of my own autism crawled out of the woodwork again.

So yeah, there's that, but there's actually something much more important.

Let's take a field trip to cuckoo land, and I'm talking about the actual bird, not some mental hospital called home by Jack Nickolson. The mother cuckoo is notorious for her dislike of raising her own offspring. So, what does momma cuckoo do? She lays her egg inside the nest of another bird that's off feeding. When the new stepmom arrives, she might notice a new egg... or not... and cares for it as she does with all the other eggs. Once the baby cuckoo is hatched, is when things get a little weird. It might be blatantly obvious for the rest of the world that this baby is different. Stepmom, however, does her best to raise it and the siblings don't know any better either.

But the question is, does the baby cuckoo realise it is actually different from his (step) brothers and sisters? Sure, it might feel like a stranger in Moscow, it might feel left out, it might even feel like something is off, but does it know why and how? Does it realise that its experiences differ from his 'nest mates' and does it realise its potentials and struggles are incomparable to that of its other siblings? In my opinion, no.

Many autistics, especially those with a late diagnosis, can feel like a cuckoo chick. It's obvious we don't quite fit in. It's obvious we can feel like strangers even in our own families, but why?

For me, it wasn't until after my diagnosis and after I read about all that is related to autism, that I started to realise that how I experience the world, how I interact with others, what goes on in my mind, is very different from my neurotypical peers.

Oh sure, my ticks and stimms would stick out like the proverbial sore thumb and this behaviour was glaringly divergent to the rest of my peers. And thus, the behaviour was suppressed whenever possible and written off as quirky, funny or even cute at times.

But as I got older, as my focussed shifted towards myself and my struggles rather than my obsession with fitting in and navigating this overwhelming world, I realised that my own feelings of 'not fitting in', feeling awkward or just plain weird, had a neurological origin. For instance:

I - like many other autistics - have a form of alexithymia. I have trouble to (facially) express my own emotions and to even recognise what I feel exactly. It's the reason why I was often called arrogant, aloof or emotionless. But how can someone with alexithymia go by unnoticed? Well, as most autistic women can confirm, we're very easy to adapt. Replying the 'how do you feel'-question with an 'I don't know' is a 'no-no' in social situations, so I've learned to just blurt out the first thing that comes to mind whether I actually feel it or not. I got so good at this, I even fooled myself for a while. Just say you're fine, fake a smile and raise your glass in a noisy and overcrowded bar with your student peers in hopes they'll talk to you again the next day. I actually thought that this is how everyone manages his or her emotional part of life. You just blurt out whatever and that'll give you something to talk about. But as it turns out, there's no fooling your own body and I ended up paying dearly for not being in tune with my own emotions and overlooking the early signs of distress.

Sensory overload is main theme for practically all people with autism. I never understood why people would go shopping on a Saturday, why one would visit a concert or why going out to bars was such a priority in university. For the life of me, I didn't get it. But that didn't stop me from attending.

I wanted to fit in, I wanted a family of friends, I wanted people to be there for me as much as I wanted to be there for them. I wanted to feel connected.

But I never did. After every social event, I would turn pale as a sheet, I would feel dizzy, my fatigue became uncontrollable, and my body would start to hurt. I had to leave, there was no option here, despite the fact that my peers thought I left by choice and attributed my early departures to laziness, disinterest or just me being a hermit. Yet, even though I realised I was different, I never realised that my experience of sensory input, the effect noises, touch and lights had on me, contrasted how my peers experienced this. I never realised fully that they could not hear every glass that was set on a table, that they couldn't hear any of the three conversations that people around us were having, that bright lights didn't physically hurt them, that flickering lights didn't confuse and disorientate them, that loud noises didn't make their ear tubes contract in a painful way or that dancing closely with others on the dance floor, unexpected hugs or even an arm around their shoulders, didn't hurt their skin or make them cringe.

I knew I was different, I just didn't realise exactly how different I was

Synesthesia is also often a part of autism. When you have projective synesthesia, letters or numbers can have certain colours, or when you have associative synesthesia (like me) there can be a very strong and involuntary connection between the stimulus and the sense that it triggers. For instance, I feel sounds. I can have strong physical reactions to certain types of sound. A deep, rumbling sound can make me feel nauseous, short, high pitched sounds make my ear canals spasm and crunchy noises can make certain parts of my body feel itchy, like my neck and my arms. Did I realise that synesteshia might be a bit strange and that only 4 percent of the population experience this phenomenon? No! In fact, I didn't even know it had a name until a few days ago! Let alone that I realised back in the day that I was struggling with a neurological difference.

And then there's communication. There's a wide spectrum of communication difficulties that people with autism struggle with. For me, I have major problems with context. When my peers would use words like 'them', 'there', 'the other day' or 'that thing' (wink, wink), I was left absolutely clueless while every one else seemed to be right on topic. Also, I have trouble seeing the importance of certain subjects. The other day, my husband told our next door neighbour he had bought a new toothbrush. 'Why would she be interested in that?' I asked him. 'It's small talk, honey', he replied, 'now she might tell me what toothbrush she has.' Again, I was clueless. 'Why would you want to know what toothbrush she has?' I asked my husband. He replied he didn't really want to know what toothbrush she has and that it was just meaningless small talk, but this sort of thing is absolutely mind boggling to me. To tell someone about your new toothbrush, to elicit a response about that other person's toothbrush, and meanwhile not really being interested in the answer. What a waste of energy. People with autism are very practical, theoretical thinkers. Subjects like toothbrushes, unless it does wonders for your sensory issues, are absolutely irrelevant and insignificant to (most of) us. I have always been aware, of course, of the discrepancies between my own interests and the interests of most of my peers, but have I always been aware that this was due to a neurological difference? An alternate wiring inside my brain? No, absolutely not.

There are so many more examples of differences in perceptions and experiences between autistics and neurotypicals, I could write a book. My point is, that even though we are neurologically different from the majority, that doesn't mean we always realise we are, even at a later age.

And to be completely honest with myself, I think I tried so hard to fit in, that I pushed all these 'little discomforts', all the mind boggling experiences, all the tell-tale signs of my divergence away as far as I could. My need to fit in was so enormous, especially coming from a family that wasn't exactly a safe heaven of acceptance.

So, how come I've never realised before that I was autistic? Does the baby cuckoo ever realise it's actually not a black bird like its siblings? Being autistic was normal to me. I've never known another way of being. Yes, I felt different, but I never realised that feeling had a neurological origin. And how could I?


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