Am I autistic enough?
Updated: Jul 21, 2019
Late diagnosis can be so... polarising....
On the one end, the fact that I have been diagnosed well into my thirties indicates that I have been able to function quite properly in this society. I have managed to find a job, be in a meaningful relationship and I can call myself a mother. That's certainly something most of my autistic fellows can't say for themselves. Most of the stories I've come across are devastating ones of people being unable to speak, being unable to control their stimms and tics and being unable to live up to any demands. I am - if you can see it that way - on the verge of the spectrum perhaps.
I have come to notice that having the form of autism that I have, one that I can conceal quite well, somehow indicates that I am 'lucky'. I am lucky to only be on the verge of the spectrum. Autism certainly can affect people much worse than it has me, and so really, I shouldn't complain. It is the unspoken message that I get from those around me. Well intended 'chin-ups', loving words that are supposed to help put things in perspective - "Look at Jim, he's off much worse" - and supportive words of encouragement - "At least you are still able to hold a job" - also contain a hidden message; that I have no reason to express my hardships.
There's a message if I read in between the lines of those who try to support me, it seems. And the message is that even though I'm not quite normal, I'm not really autistic either... I mean, look at Jim (for instance), he's the one who's truly autistic, no doubt about that!
People like me, women mostly, when they receive this late diagnosis, often struggle with identification. Am I truly autistic? Not if I compare myself to others who are left without a voice or can't hold a job. Compared to them, I seem rather normal. So, am I normal? Well, not compared to my neurotypical peers who can linger for hours at the neighbourhood barbecue and still attend salsa class in the evening and enjoy their lives to the fullest.
So, what am I?
Next to a missing sense of identity, I can also struggle with my own feelings of sadness, dispair and anger. Am I allowed to grieve the fact that I cannot cope with birthday parties, busy offices and public transport? Is it okay for me to have a meltdown? Can I tell you about how hard it is for me to keep a conversation going, to pretend I am on top of everything, to smile on cue? Can I even begin to tell you what that's like? I have noticed that whenever I do open up about my hardships, and outside this blog those moments are rare, I get slammed with well intended words that try to put my situation in context. Words that tell me things could have been much worse. After all, look at Jim.
Yet, before I was diagnosed, these loving words of support told a very different story. Pre-Diagnosis, I came across as silent, introverted, weird, whimsical and perhaps a bit outlandish. People wondered about what I might be feeling as they couldn't read my face. They steered clear of me because I was that girl that was so hard to understand and who didn't really make contact. She was in her own little world, even egocentric perhaps.
The loving words of support didn't try to put things into context for me pre-diagnosis, they were aimed to get me to 'fit in'.
* If only I could have a better sense of humor, perhaps I should practise on that.
* If only I would express myself, show the world that I have feelings just like every one else, I would certainly be part of society.
* If only I could stop being so ponderous, others don't like my seriousness, so if only I could change that about myself.
But I couldn't. God knows I tried, but you cannot teach a fish to climb a tree, as the popular saying goes.
If I let the people around me just assume I was neurotypical and I tried to blend in, the message I received would be aimed at pointing out that I wasn't normal, I didn't quite belong.
And if I tell the world now that I am autistic, their words, even though well intended, will aim to sush me, they will tell me how lucky I am, that I should be grateful. After all, look at Jim...
These loving words are killing me...
I know everyone around me means well and they certainly don't intend to make me feel bad. But these loving words have got me stuck between no place and nowhere. I'm certainly not 'normal' (by lack of a better word). Most people around me know I am autistic and unconsciously tend to treat me as such and it is sometimes blatantly obvious I stick out like a sore thumb. Yet, I don't feel really autistic anymore either, even though I have been diagnosed, because it appears that unless you are like Jim, you have no reason to speak about your autism. You don't represent the autistic community, because the autistic community, according to the media and the general opinion, consists of people who need around the clock care and suffer debilitating limitations.
If you identify as normal, you must appear normal
Which means you have to do everything you can to fit in.
If you identify as autistic, you must appear autistic.
Which means that you must need care, that you cannot voice your own opinion, that you are visibly disabled.
But what if you identify as autistic, but appear rather normal?
In that case, based on what I have experienced, Martians have a better chance of fitting in than I have!
I fight a non-stop battle against ableism, against stereotypes, against well intended words, against love, it sometimes seems.
I have to fight continuously to show, to communicate that I CANNOT do certain things because of my autism and that I CAN do certain things despite of my autism. I feel like a walking contradiction, an enigma, even to myself. I am autistic, yet I seem to function normally, do I then, have a right to speak about my troubles?
What am I? Where do I belong? Is there anyone out there like me? Where do I fit in?
In other words, am I autistic enough?